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

  1. Recognizing Early Signs: The first step toward an autism diagnosis often begins with recognising early signs and seeking professional advice. Many women only begin to realise that they might be autistic when they go through the process of a child being diagnosed (or even a grandchild – our oldest group joiner was 83, who had just been diagnosed after her daughter and granddaughter were!). If you’ve gone your whole life so far without being recognised as autistic you almost certainly present internally. Internal presentations can be harder to spot – take a look at our Internal Presentation of Autism Checklist (IPAC).
  2. Referral: Firstly, we believe that self-diagnosis is perfectly valid. But if you want an official diagnosis you will need to see your GP if going via the NHS. If you’re already under another health professional such as a psychologist they may be able to refer you. You will need to explain why you think that you need an assessment, so it’s a good idea to make notes reflecting your research and instances where it seems obvious to you that you may be autistic. You’ll need to show why it will be a benefit to you to be diagnosed. Remember that GPs are not autism specialists and may have limited knowledge, especially of an internal presentation. Referring privately is done by 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). If seeking a private assessment, make sure that the practitioner you choose is NICE-compliant.
  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. During this stage, a comprehensive medical history is gathered, and observations and interviews are conducted to assess developmental, social, and behavioural patterns. There will be questions about your early childhood which can be tricky if this was a long time ago!
  5. Main Assessment: If the initial assessment shows autism is a possibility, the next step is the main assessment. This evaluation may involve a team of professionals, or it may be a single psychiatrist or clinical psychologist. your behaviour, communication, social interaction skills, and cognitive abilities are thoroughly evaluated through standardised assessments, observations, and in some cases parent interviews (yes even if your childhood was a long time ago).
  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 females, since some of the questions are worded in a way which skews them to traditional ‘boy’ interests. The screening tools may not always seem appropriate for adults and the wording of them may make them impossible to answer accurately – tell the assessor if so. 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 assessor(s) review the findings and make a diagnostic decision. If you meet 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, offering support, guidance, and (we hope) resources. This feedback session is an opportunity for you to gain a better understanding of autism. 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 people 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 GP with your permission, and you may want to share your diagnosis with your employer if that feels appropriate and you would like reasonable adjustments to be put in place.