How to get an autism diagnosis via an NHS Referral Pathway

If you think you might have an Autism Spectrum Disorder (ASD), one of the first steps is to explain to your GP that you think you have autism. They may then complete a screening measure, often the Autism Quotient 10 (AQ10), to see if you meet the criteria. If so, the GP will then refer you, or your child, to the appropriate NHS autism diagnostic service, or tell you how to self-refer.

Unfortunately, due to high demand on the NHS, there are often long waiting lists for an autism diagnosis, and these vary depending on the geographical location and age of the person seeking a diagnosis. This can cause a lot of distress and anxiety for both the person seeking a diagnosis and their family/friends. There are also certain complex profile types which may not be easily assessed by simple screening measures. Another consideration is that diagnostic reports can vary in level of detail. Our service provides bespoke and detailed reports.

As such, people often research private alternatives to the NHS.  It can, however, be hard to know what to look out for when finding a private autism diagnostic assessment, particularly as the costs, expertise and assessments used vary considerably.

What do we mean by Gold Standard?

We pride ourselves as specialists in ASD and therefore we want to provide the NICE guidelines “gold standard” for ASD assessment. This includes using two of the most reliable diagnostic assessments (ADOS-2 and ADI-R). However, to ensure a “gold standard” assessment, our Clinicians will both be present throughout the ADOS-2 and the ADI-R. This is different to most other assessment services where either there is only one professional completing the assessment or one professional completes the ADOS-2 whilst the second professional completes the developmental history (ADI-R) and then they meet to discuss as a Multi-Disciplinary Team (MDT). Our prices, therefore, reflect such a “gold standard”, as there will be a highly experienced and specialist MDT throughout the assessment making the assessment more robust and reliable, particularly with harder to diagnose groups or where there are comorbid diagnoses.

Future Plans for Autism Anglia’s Diagnostic Service

Getting a diagnosis is only the beginning of the journey for someone with ASD and their families.

Being a charity, we are conscious that the charges for this service may be beyond the reach of some, but we believe that it offers excellent value considering the level of expertise of our professionals, the time we are able to dedicate to each individual and the aftercare we are offering.

Autism Anglia is a not for profit organisation, which means that, by law, all income is reinvested into the charity to benefit the people we support, not only within our services but also the wider local autistic community.

As the Diagnostic Service grows, it will enable Autism Anglia to continue offering vital services and further develop both pre and post-diagnostic support.

Initially, we only accepted privately funded referrals. We were then able to evidence that we can manage a successful diagnostic service and we have recently become part of a regional NHS diagnostic pathway as part our planned expansion of our service.

Is a private diagnosis recognised for the Education, Health and Care Plan (EHCP)?

To address the queries about whether a private ASD diagnosis is recognised, The SEND Code of Practice (2015) is quite clear; all advice covers the relevant education, health and care needs of the child or young person, as well as the views, wishes and feelings of the parent. There is no basis in law for the Local Authority to reject a professional report simply because it was privately obtained. If this happens you should consider making a complaint, asking the Local Authority to explain why they are ignoring the private diagnosis.  

The SEN and Disability Code of Practice, which is statutory guidance issued by the government, contains further detail on what LAs should consider. Paragraph 9.14 of the Code states that “the local authority should consider whether there is evidence that despite the early years provider, school or post-16 institution having taken relevant and purposeful action to identify, assess and meet the special educational needs of the child or young person, the child or young person has not made expected progress”. 

The LA should pay particular attention to:

  • Evidence of the child or young person’s academic attainment (or developmental milestones in younger children) and rate of progress;
  • Information about the nature, extent and context of the child or young person’s SEN;
  • Evidence of the action already taken by the school or other settings;
  • Evidence that where progress has been made, it has only been as the result of much additional intervention and support over and above that which is usually provided; evidence of the child or young person’s physical, emotional and social development and health needs, drawing on relevant evidence from clinicians and other health professionals and what has been done to meet these by other agencies.

Refusal by a local authority to accept a private diagnosis following NICE guidelines would suggest an omission in following clear and explicit requirements re SEND. A diagnosis made under these terms should be regarded as credible evidence for a tribunal and there would need to be clear and succinct counter-evidence where repudiation may occur. For example, sometimes Local Authorities ask their own experts to comment on, or quality review a diagnostic report. Refusal to issue an EHC Plan, would be an appealable decision. This means if you appeal the decision a Tribunal would be under a duty to consider all the documents placed before them, private or otherwise.

In relation to the NHS, a privately obtained report is as crucial as an NHS one. If you are advised that a private diagnosis report will be ignored, this is incorrect advice. NHS England state, “You're still entitled to free NHS care if you choose to pay for additional private care.”

In summary, a diagnostic report written by registered, trained, and experienced professionals as stated by NICE will provide a document that is as reliable and crucial as an NHS diagnostic report.

What to look for in a private ASD diagnostic service

According to the National Institute for Health and Care Excellence (NICE) the “gold standard” comprehensive ASD assessment should consist of the following:

  • Be team-based and draw on at least two different professions (i.e. Paediatrician, Clinical Psychologist and/or Speech and Language Therapist) who are trained and competent in autism diagnosis.
  • Where possible involve a family member, carer or another informant who can recall the childhood development of the person seeking an assessment.
  • Use documentary evidence (such as school reports) of current and past behaviour and early development.
  • Not rely on any specific autism diagnostic tool alone to diagnose autism.
  • Include a detailed developmental history, focusing on developmental and behavioural features consistent with ICD-10 or DSM-5 criteria (consider using an autism-specific tool to gather this information, such as ADI-R or DISCO).
  • Include an assessment (through interaction with and observation of the person) of social and communication skills and behaviours, focusing on features consistent with ICD-10 or DSM-5 criteria (consider using an autism-specific tool to gather this information, such as ADOS-2).
  • Consider differential diagnosis.

There are several autism screening measures available for free online, such as the Autism Quotient and Empathy Quotient. These, however, are only screening measures and are not able to diagnose, as it requires trained, experienced Clinicians, to give an Autism Spectrum Disorder diagnosis.  Clinicians, however, will often use such screening measures to inform their more detailed, thorough ASD assessment.

The cost of private ASD diagnosis assessments, therefore, varies considerably depending on the number of professionals involved, the assessments used, time taken for the assessment and the pre-diagnostic and post-diagnostic support offered.

Why the ADOS is shorter than the ADI-R?

Our service uses gold standard diagnostic tools to provide a high quality and robust assessment, as recommended by NICE guidelines. The tools are the Autism Diagnostic Observation Schedule (ADOS), and the Autism Diagnostic Interview (ADI-R). Both assessment tools are standardised and follow a set structure, which is scored in line with the DSM-5 and ICD-11 Manuals.

The ADOS uses planned social situations to trigger responses and interpersonal interactions, looking only at current behaviours and skills, which usually takes around an hour to complete, and we always carry this out in-person with the individual. This allows our experienced speech and language therapists to note any social communication traits that could be missed with an online appointment and is reviewed independently by a clinical psychologist.

However, we also use the ADI-R to assess whether autistic traits were present from young childhood as ASD is a neurodevelopmental condition. The ADI-R consists of over 90 questions, discussing the individual’s development from birth to current day, focusing on the qualities of reciprocal social interaction; communication of language; and restricted and repetitive interests and behaviours. These set of questions can take between 4-5 hours to complete, including breaks. This ideally involves a family member as an informant who can recall childhood development for the individual seeking the assessment.


 How much is an assessment and what is included in the price?

We will be pleased to provide a welcome pack to those who are interested in our service. This has a breakdown of the costs involved and what we offer. Our aim is to provide a high-quality personalised service with added value.

We are always happy to explain in more detail or answer questions, and can be contacted by phone 01206 216476 or email [email protected]

Patient Choice FAQ

Patients registered with a GP in England are entitled to choose their healthcare provider if the following criteria are met

  1. A GP, in consultation with the patient, decides to refer a person for assessment or treatment.
  2. The wait time for a service exceeds 18 weeks or the patient has been waiting at least 18 weeks.

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