We diagnose Alcohol-Related Neurodevelopmental Disorder (ARND)

We are one of the few places in the UK that can confidently diagnose ARND. This is because, as the only specialist FASD clinic currently in the UK, we have seen over 100 complex cases and have experience in knowing when the label is appropriate. The diagnosis of ARND is one of exclusion and inclusion. This means that factors such as neglect, prematurity, genetic disorders and other pregnancy related issues including drugs need to, as far as possible, be identified, understood and their effects accounted for. We are used to doing this and will make comment in all areas. Where possible we will make the full diagnosis and if not, we will be able to advise what the appropriate diagnostic formulation should be.

How do we diagnose ARND?

Diagnosis of full FAS can be done by many. It is well recognised and reasonably straightforward to diagnose by geneticists and trained paediatricians. Most commonly, letters and wider correspondence we receive would suggest that confidence in diagnosing ARND, where facial features are absent, is the hardest skill. Successful diagnosis requires a wide multidisciplinary assessment and evaluation of numerous domains in order to truly build up an accurate picture.

Worldwide, it is really only in specialist clinics or specialist neurodevelopmental settings with experience of ARND  that this can be achieved. We have established ourselves with this multidisciplinary skill set, and whilst it is broadly in neurodevelopmental assessment, with some specialist additions related to FASD, we have the expertise to recognise the subtle deficits seen with this condition compared to other neurodevelopmental disorders. Once all areas are investigated and other conditions ruled out, a reasonably confident diagnosis of ARND can then be made. It is not possible to do this in a short assessment as the range of parameters required to give a full answer is extensive.

It is also the case that, individually, these parameters will not provide a complete picture. For example some of the subtleties of cognitive testing would suggest that individuals may test well in one area yet fall down in others. Evaluation using the communication assessment will give indicators to verbal function, confabulation and medium-term memory that may not be established in other testing. It is the experience of our team to know what to look for that makes the assessment different and necessary to support the process. It is only by doing all parts that the whole picture can be evaluated, which allows a confident diagnosis to be made.

We will consider other neurodevelopmental disorders such as ADHD & autism

The clinic is essentially a specialist complex neurodevelopmental service that at other times provides specialist services for autism and ADHD. The team are used to seeing these conditions, diagnosing them and understanding their causes. Expertise within the team also allows us recognise wider neurodevelopmental presentation such as Tourette’s, as well as the influence of other genetic disorders leading to neurodevelopmental presentation such as fragile X.

Because neurodevelopmental outcomes such as ADHD and autism occur frequently in those exposed to prenatal alcohol, these form a core part of the assessment. No single approach is used, rather evaluation using observational, historical information and screening tests in all areas are used to diagnose these disorders and the relationship between them is explained in the final reports. This clinic has been involved in researching these areas and has published material, particularly on the relationship between FASD and autism.

We will give management guidance regarding behaviour which is different to what is available locally

The purpose of the clinic is not to replace local services. It is to support the diagnostic and behavioural management provided by local teams. Because at this point, in the UK, there remains limited experience of understanding the behavioural management of this disorder, it is only by completing holistic assessment that we are able to give evidence-based recommendations for local services to implement. This is backed up with extensive experience of these cases. It has been clearly shown through evidence that to not do this and to misunderstand the presentation only leads to a worsening situation for families, individuals and later the health and social care system. In the most recent evaluation in Canada, the impact and cost of not completely assessing conditions early on have been shown in other countries to have an excess cost of over $800,000 per case. Early intervention, evaluation and management strategies can minimise the impact of this on all aspects of the public purse.

The clinic, therefore, has two main aims. Firstly, we will clarify both the diagnosis and the wider neurodevelopmental profile. We will also offer guidance to local services in terms of strategies to manage behaviours in the most complex group. This involves support in cases where difficulties continue to be experienced and local services continue to struggle, either through these conditions not quite meeting specific diagnostic criteria for services provided locally, or where there is a lack of expertise to understand initially how best to deal with such conditions.

Therapy and repeat assessments

At this point in time we do not provide therapy after assessment. There are other local services which are better placed to implement our recommendations. Situations have occurred where individuals have been assessed at a young age and a re-evaluation has been requested in the form of a new referral, however in principle most people are seen only once.