Our Services Diagnostic Service Autism Anglia is excited to announce the launch of an Autism Diagnostic Service. The service will open on Tuesday 5th November 2019 within a new, purpose-built Diagnostic Centre, located at Doucecroft School in Colchester, Essex. Why have we developed a Diagnostic Service? How to get an autism diagnosis is one of the top five enquiries we receive. The charity has therefore responded to public demand by investing in and developing the new diagnostic service. This has taken much planning and specialist training from dedicated staff. Since we announced the launch of the new Diagnostic Service, there have been lots of important questions asked and we hope that your questions are answered on this page. Firstly, we will show you what we are offering in terms of the diagnostic packages we have to offer. Further down the page, we have included information in response to the questions you have asked or may have when obtaining a private diagnosis. Comprehensive “Gold Standard” Child ASD assessment (aged 3-17years): £1750 A multidisciplinary team consisting of Dr Sarah Clayton, Lead Clinical Psychologist and Mrs Katherine Wright, Lead Speech and Language Therapist who have specialised in ASD for over 10 years Detailed developmental history using the Autism Diagnostic Interview - Revised (ADI-R) with a parent, family member, partner or other informant Autism Diagnostic Observation Schedule (ADOS 2) to assess social communication skills and behaviours Review of historical and current reports from professionals and school reports where possible Dr Clayton and Mrs Wright will both be present throughout the ADOS and ADI-R to ensure consistency, reliability and multi-professional expertise when considering differential diagnosis Liaison with nursery/school/college, including observations if required The face to face assessment will take a minimum of 4 hours Feedback session stating the outcome of the assessment Detailed, individualised diagnostic report outlining outcome of assessment and recommendations Post assessment follow up session if required (this can be to develop understanding and discuss options both if the person has or has not been diagnosed with ASD) Post diagnostic advice and support through Autism Anglia, including EHCP and welfare rights advice and the option for parents/guardians to access our support and advice groups or signposting to other local services Comprehensive “Gold Standard” Adult ASD assessment (18 years plus): £1500 A multidisciplinary team consisting of Dr Sarah Clayton, Lead Clinical Psychologist and Mrs Katherine Wright, Lead Speech and Language Therapist who have specialised in ASD for over 10 years Detailed developmental history using the ADI-R with a parent, family member, partner or another informant ADOS 2 to assess social communication skills and behaviours Review of historical and current reports from professionals and school reports where possible Dr Clayton and Mrs Wright will both be present throughout the ADOS and ADI-R to ensure consistency, reliability and multi-professional expertise when considering differential diagnosis The face to face assessment will take a minimum of 4 hours Feedback session stating the outcome of the assessment Detailed, individualised diagnostic report outlining outcome of assessment and recommendations Post assessment follow up session if required (this can be to develop understanding and discuss options both if the person has or has not been diagnosed with ASD) Post diagnostic advice through Autism Anglia, monthly meetups and welfare rights advice, alongside signposting to relevant local services Pre-Screening It is important to note that prior to carrying out the diagnostic assessment for both children and adults, we will be sending out several autism screening measures. This will be a free of charge service, so that people who do not meet the autism threshold, will not be put forward for the assessment unless discussed otherwise. 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 two 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. Getting 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 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, partner, carer or another informant. 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 dependent on the number of professionals involved, the assessments used, time taken for the assessment and the post-diagnostic support offered. 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. 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 two 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. An aspiration of Autism Anglia is for the Diagnostic Service to evidence the need for a diagnostic service and for pre and post-diagnostic support for adults and children, so that we can approach commissioners to provide such a service. We would also welcome the addition of extra expertise to our Diagnostic Service, such as Paediatricians and Occupational Therapists. Although initially, we will only be accepting privately funded referrals, we are keen to be part of the NHS diagnostic pathway and are already communicating with local commissioning groups about this. However, in order for us to be part of the NHS diagnostic pathway, we need to be able to evidence to commissioners that we can manage a successful diagnostic service. We hope that this answers some of the questions about not only how to seek an ASD diagnosis, what to look out for in a private ASD diagnosis, but also what the Autism Anglia Diagnostic Service offers. However, if you have any further questions, please email us and we will get back to you as soon as possible.