What happens in an autism observation session?

What is the observation session?

In our assessment, the observation session uses the ADOS-2, short for the Autism Diagnostic Observation Schedule, Second Edition. Its UK distributor describes it as a “semi-structured, standardised assessment of communication, social interaction, play, and restricted and repetitive behaviours”.

Semi-structured means the clinician follows a planned set of activities, but in a relaxed, conversational way, so it feels more like spending time together than sitting a test. Standardised means the activities are presented in a consistent way, so the team can compare what they see with what the tool was designed to look for.

The ADOS-2 can be used across a wide age range: in the distributor’s words, “from one-year-olds with no speech, to adults who are verbally fluent”. Oakwell assesses children from age 6, teenagers and adults.

Why is an observation part of the assessment?

Autism is identified by looking at how a person communicates, relates to other people and experiences the world, now and throughout their life. The developmental history, or ADI-R, tells the team about the past, usually from a parent or carer. The observation lets the team see how the person communicates and interacts today.

No single tool decides. The National Autistic Society says a diagnosis “should not be based on any autism-specific diagnostic instrument alone but should be informed by information from a range of sources, together with clinical judgement”. That’s why our whole team reviews the observation together with the developmental history, the questionnaires and, for children, what school tells us.

What happens during the session?

The ADOS-2 has several modules, and each person does one, chosen by their spoken language and age. For the ages we see, that means one of these:

• Module 1, for children who don’t yet use phrases consistently
• Module 2, for children of any age who use phrases but aren’t yet fluent speakers
• Module 3, for verbally fluent children and young teenagers
• Module 4, for verbally fluent older teenagers and adults

The activities are a mix of play, tasks and conversation, depending on the module. The NHS describes assessment teams asking children “to do tasks to show how they communicate, move, think and react” and watching “how your child plays and interacts with you”. For verbally fluent teenagers and adults, there’s more conversation and less play.

There are no right or wrong answers, and nothing to pass or fail. The clinician is interested in how the person naturally communicates and responds, not in getting things “right”.

How long does it take?

At Oakwell, the observation session takes about 45 minutes to an hour. The UK distributor gives the typical length as 40 to 60 minutes. We adjust the pace to the person and offer breaks, so it’s fine if it takes a little longer.

Is the session by video or face to face?

A structured observation session using the ADOS-2, usually by secure video, or face to face at home where that suits your child better. We choose the approach with you, for comfort and so the person being assessed can take part easily. If home isn’t possible for a child, the session can be arranged at school.

CHECK: Hans to explain how the ADOS-2 activities are carried out by video, and how the report records the method used (§22.1)

If the session is by video, we’ll explain beforehand what to have ready. Usually that’s a quiet room, a laptop or tablet rather than a phone, and a reliable internet connection.

Who will be there?

A clinician from our team leads the session. CHECK: which clinician usually leads the observation For under-16s, a parent or carer is present at home visits; 16 and 17-year-olds are offered the choice.

Children settle in different ways: some like a parent close by, others do better on their own with the clinician. Tell us what helps your child, including where you’ll be during the session, and we’ll plan around it.

How can I prepare my child?

• Keep it simple and honest. You might say they’ll be meeting someone who wants to get to know how they think, play and talk, and that there are no wrong answers.
• Explain what will happen and when, in the way that works for your child, for example a simple picture schedule: say hello, activities and chat, a break, finish.
• Choose a quiet, familiar space, with water, a snack and any comfort items nearby.
• Try not to practise or rehearse answers. The clinician wants to see your child as they usually are, on an ordinary day.
• Plan something calm and enjoyable for afterwards.
• If your child finds video calls hard, tell us. The session can be face to face at home instead.

CHECK: preparation advice with Hans (§21a)

Do I need to tell my child it’s an autism assessment?

That’s up to you: you know your child better than anyone. Some families use the word autism; others say the session is to help everyone understand how the child thinks, learns and feels. Use words your child already knows, keep it positive, and be ready for questions. If you’d like to talk through how to explain it, ask us at the initial consultation.

Will the session be recorded?

CHECK: are observation sessions recorded, who can view recordings and how long are they kept? (D2.4)

Whatever the answer, you’ll know before the session starts, and our privacy notice will explain how any recording is stored, who can see it and how long it’s kept.

How can I prepare if I’m the one being assessed?

There’s nothing to revise. Choose a time and place where you can talk without being interrupted, and tell us about anything that would make the session easier, such as breaks, lighting or background noise.

Many autistic adults have spent years masking, which the National Autistic Society describes as a strategy used “to appear non-autistic”. It also says clinicians “should be aware that some autistic people may mask during the diagnostic process”. You don’t need to perform, or to hold back. If you notice yourself masking, or you feel tired or overwhelmed, it’s fine to say so.

Our guide to being assessed for autism as an adult covers the rest of the process.

What happens after the observation?

The observation is one step of ten. Afterwards, the whole team reviews each case together against the DSM-5 criteria, and may ask you for more information. You then have a feedback appointment, usually online, where we explain what we found in plain language, including strengths as well as any challenges.

Your written report follows, usually within 4 weeks of the feedback appointment, and a follow-up call within 6 weeks of the report is included. You can read all ten steps of the assessment journey, with how long each one takes.

What if the session doesn’t go to plan?

That’s all right. Everyone has off days. The clinician can slow down, take breaks or change the order of activities. If a session can’t go ahead, or needs to be finished another day, we’ll talk with you about what happens next. CHECK: rebooking if an observation session can’t be completed (D2.3)

If you’re not sure whether your child is ready for an assessment at all, the free 15-minute call is a good place to talk it through.