Navigating the Autism Diagnosis Process in the UK: A Step by Step Guide for Parents

  1. Recognizing Early Signs: The first step toward an autism diagnosis often begins with recognising early signs and seeking professional advice. Parents, caregivers, teachers, or healthcare providers may notice behavioural patterns such as delayed speech development, repetitive behaviours (stims), or perhaps difficulties in social interactions in external presentations. Internal presentations can be harder to spot – take a look at our Internal Presentation of Autism Checklist (IPAC).
  2. Referral: Children can be referred on the NHS either by their paediatrician, by their nursery/school or by the parent to their GP. Referring privately is done by the parents searching for and contacting private practitioners. Asking for recommendations for private practitioners is a common question in our Facebook group. You will need to decide if you want to stay within the NHS (a long waiting list of up to 4 years but free of charge) or choose a private practitioner (a much shorter waiting time but could cost between £1,000 – £3,000)
  3. Right to Choose: Another possibility which may be available is to access Right to Choose through your GP. Our group members have had varying success using this method but it’s definitely worth asking if it’s possible since if so it should save waiting time. Decisions will be made on a local basis.
  4. Initial Assessment: Once the possibility has been raised, there may be an initial assessment or screening conducted by healthcare professionals. Depending on commissioning of services in your area this may involve a referral to specialised services such as a paediatrician, child psychologist, or child and adolescent mental health services (CAMHS) if using the NHS. During this stage, a comprehensive medical history is gathered, and observations and interviews with the child and their family are conducted to assess their developmental, social, and behavioural patterns.
  5. Multi-Disciplinary Assessment: If the initial assessment shows autism is a possibility, the next step is a multi-disciplinary assessment. This evaluation involves a team of professionals, including psychiatrists, psychologists, speech and language therapists, or occupational therapists. The child’s behaviour, communication, social interaction skills, and cognitive abilities are thoroughly evaluated through standardised assessments, observations, and parent/caregiver interviews. The team works collaboratively to gather a holistic understanding of the child’s strengths and challenges.
  6. Screening tools: The assessment will use a screening tool such as the ADOS (Autism Diagnostic Observation Schedule), DISCO (Diagnostic Interview for Social and Communication Disorders), the ADI-R (Autism Diagnostic Interview – Revised) or 3Di (Developmental, Dimensional and Diagnostic Interview). The majority of assessments in the UK seem to use the ADOS, which has some drawbacks in terms of diagnosing girls, since some of the questions are worded in a way which skews them to traditional ‘boy’ interests. All of the screening tools were developed to assess people according to a set of diagnostic criteria for autism, which are contained in the diagnostic manuals ICD-11 and DSM-5.
  7. Diagnostic Decision: Based on the comprehensive assessment, the multi-disciplinary team reviews the findings and makes a diagnostic decision. If the child meets the criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) or the International Classification of Diseases (ICD-11), a diagnosis of Autism Spectrum Disorder (ASD) is provided. The team ensures that the diagnosis is accurate, reliable, and takes into account any co-occurring conditions or developmental differences. (Please note that Autistic Girls Network does not endorse or approve of the medicalised language used in autism diagnosis, and does not believe that autism is a disorder or should be included in a manual of ‘mental disorders’.)
  8. Feedback and Support: Following the diagnostic decision, the healthcare professionals provide feedback to the child’s family, offering support, guidance, and (we hope) resources. This feedback session is an opportunity for families to gain a better understanding of autism and its impact on their child’s development. It may also involve discussions on available therapies, and educational support options tailored to the child’s specific needs. It’s important that feedback and reports are presented in a neuro-affirmative way.
  9. Post-Diagnostic Support: In the UK, post-diagnostic support typically involves signposting families to local services, support groups, and organisations specialising in autism. Social care assessments may also be conducted to determine eligibility for additional support services, though in many cases this can be hard to attain.
  10. What happens next? If your referral was through the NHS, it may have taken years to get to this stage. But now, the team should send the diagnostic report to your child’s GP with your permission, and you should share it with school so that they can put support in place. If your referral was private, in some areas you may in practice need it to be ratified by your local neurodevelopmental team, although all diagnoses should be accepted by both NHS and schools as long as they are NICE-compliant.