Autism diagnostic service delivered on behalf of West Suffolk NHS Foundation Trust
Getting ready for your child's assessment
Your child has been referred for an autism assessment by West Suffolk NHS Foundation Trust, and their referral has been passed securely to us – HG Mind Works – to carry out. This guide explains what the assessment is, what will happen, and how to help your child feel ready.
There’s no rush. Take your time, read what’s useful, and come back to the rest whenever you need to.
Why is my child being assessed?
West Suffolk NHS Foundation Trust’s team has reviewed your child’s referral and decided a full assessment is the right next step. The assessment is a chance for us to understand your child properly – how they communicate, how they play, what they find easy and what they find hard. We’re not looking for what’s wrong; we want to build a full, rounded picture of your child as an individual.
Being referred does not mean your child will be diagnosed with autism. It means the team felt it was worth looking more carefully.
Who will we meet?
You’ll meet a small team. On the day this will include a specialist who spends time with your child in a play-based session, and a clinician who will talk through your child’s development with you. The wider team then reviews all the evidence together, and the final report is signed off remotely by a Consultant Psychiatrist. You may not meet everyone on the day – that’s completely normal.
Triage appointment
A 30-minute video call to discuss your child's history and needs. We will ask you if you or your child have any special language or accessibility requirements.
Assessment day
Three parts together: an in-depth conversation with you, a session with your child and a basic health check.
Clinical team review
Our multidisciplinary team reviews everything together, in line with NICE guidance. You won't get an outcome on the day.
Feedback video meeting
A clinician talks you through what the assessment found and what it means, with time for your questions.
Written report
You receive a full written report with the outcome and recommendations. A copy goes to West Suffolk NHS Foundation Trust and to your GP, unless you ask us not to.
What to expect
A clinician will sit with you and talk through your child’s life from the very beginning — how they were as a baby, how they developed, how they communicate now, what they enjoy, how they get on with other children, and how they manage day to day at home and at school.
It’s a relaxed conversation, not a formal interview. There are no trick questions and nothing you can get wrong. Many parents tell us this is actually a really valuable hour or two — it’s not often you get to talk about your child in depth with someone who is genuinely listening and taking notes.
Can’t remember everything? That’s completely fine.
The clinician will guide you through it gently. There’s no pressure to have every detail at your fingertips.
If another parent, carer or family member knows your child well, it’s worth asking them to come too — two people often remember different things, and that really helps us.
The session with your child
Your child’s session uses a tool called the ADOS-2 (Autism Diagnostic Observation Schedule, Second Edition). All you really need to know is that it’s one of the internationally recognised gold-standard tools for autism assessment.
It’s not a test. It’s a structured observation – a set of activities and conversations that help the clinician see how your child communicates and relates to other people. Your child doesn’t need to perform well or say the right things; there are no right or wrong answers. The activities might include toys, picture books, puzzles, pretend play, or just having a conversation, depending on your child’s age and how they communicate.
The ADOS-2 is one important piece of the picture, but it’s never used on its own – national guidance (NICE) is clear that no single tool should decide a diagnosis. The clinician brings it together with your conversation and information from school.
Why does the session look different for different children?
The ADOS-2 has several versions, and the clinician chooses the right one before you arrive based on how your child communicates – you don’t need to do anything. For children of this age it’s usually one of the three below.
Version 1
Little or no spoken language
Version 2
Some words and short phrases
Version 3
Fluent sentences (most children aged 6+)
The conversation with you
While your child has their session, one of our clinicians sits with you for an in-depth conversation about your child’s development, called the ADI-R (Autism Diagnostic Interview, Revised). It’s a detailed, internationally recognised interview covering how your child was as a baby, how they’ve developed, and how they are now. It usually takes around 90 minutes.
It’s a relaxed conversation, not a test – there are no trick questions and nothing you can get wrong. You won’t be expected to remember every detail; the clinician will guide you gently. If another parent or carer who knows your child well can come too, that really helps – two people often remember different things.
Will I be in the room?
For most children, we ask parents to wait nearby during the child’s session, because children often respond differently when a parent is in the room and we need to see your child’s natural responses. If your child is very anxious or needs you there to feel settled, tell us beforehand and we’ll work something out – they’ll never be made to stay in the room if they’re upset. If you do stay, we may ask you to sit to the side and not join in, just so we can see your child’s natural reactions.
A note on face coverings
Please don’t wear a face mask or covering during the session. The clinician needs to see your child’s face and your child needs to see the clinician’s – the session can’t be completed reliably if faces are covered.
Video recording
With your permission, we may record part of your child’s session so the clinicians can score the assessment accurately afterwards. It’s only seen by the assessment team and isn’t shared outside it. You can say no, and it won’t affect anything about how your child is assessed.
Meet the team
Your child will be in experienced hands. Our assessments are carried out by clinicians who specialise in children’s neurodevelopmental assessment and are trained in the gold-standard tools used nationally – the ADOS-2 and ADI-R.
Every diagnosis is reviewed and agreed by the wider team together, never by one person alone, and signed off by a senior doctor, in line with NICE guidance. Here are some of the people who may be involved in your child’s assessment:
Talking to your child about the appointment
Children who have some idea of what to expect almost always find the day easier, so it’s worth saying something simple and reassuring beforehand. You know your child best – keep it honest, low-key, and matched to their age and understanding.
Some things to say that can help and what to avoid
A few things that help
- Frame it as meeting friendly people who want to get to know them - not a test, and nothing to revise or get right
- Tell them there'll be some activities, games or chatting, and that they just need to be themselves
- Reassure them you'll be close by
- Let them bring a comfort item or fidget if that helps
A few things to avoid:
- Don't coach or rehearse answers - we need to see your child as they naturally are, and that's what makes the assessment accurate
- Don't build it up as something big or worrying
For younger children (around 5–7):
“We’re going to meet some friendly people who want to find out how you play and talk. You’ll do some fun activities and games. There are no right or wrong answers – you just be you.”
For older children (around 8–11):
“We’re going to see some people whose job is to understand how your brain works – the things you find easy and the things you find tricky. They’ll chat with you and do some activities. There’s nothing to get right or wrong, and nothing to revise.”
If your child asks why:
“Everyone’s brain works a bit differently. This helps us understand how yours works, so you can get the right kind of help with anything you find tricky.”
How to get ready
It really helps to spend a little time before the appointment casting your mind back. In the days before, it’s worth trying to:
- Find the red development book, if you still have it
- Look through old baby photos or videos
- Jot down early milestones you remember
- Note specific examples that are hard to put into words
- Write down any questions you want to ask
- Think about who else might come - another parent or carer?
- Give your child's school a heads-up that an assessment is happening
Giving your permission
Before the assessment can go ahead, we need your written permission. A consent form will be sent to you separately. By signing it, you’re agreeing to your child being assessed by our team, the information gathered being used to reach a decision about diagnosis and the completed report being shared with West Suffolk NHS Foundation Trust and your child’s GP (unless you ask us not to). Information is only shared with your child’s school or other professionals if you agree to that separately.
Depending on your child’s age and understanding, we’ll also talk with them about what the appointment involves, and may ask for their agreement to take part too. You can change your mind and withdraw your permission at any time – before, during or after the assessment.
Telling us what you need
Please let us know before you come in if there’s anything we should be aware of – an interpreter, significant sensory sensitivities, wheelchair access or documents in a different format. We’ll do everything we can to make the day as comfortable as possible for your whole family.
Questions before you come in?
Today's the day
On assessment day
Everything you need to know for today, including where to go, what to bring and how the day will flow.
After feedback
After assessment day
Understanding the outcome, talking to your child about a diagnosis and where to find support.
Anytime
Resources & FAQs
Common questions, support organisations and answers you can come back to whenever you need them.
Registered with the Care Quality Commission · Provider ID: 1-25757603783
