The importance of the interview: A conversation on autism assessment & intervention with Ann Le Couteur

I was working and training with Professor Sir Michael Rutter [ADI-R co-author] at the Institute of Psychiatry (now the Institute of Psychiatry, Psychology and Neuroscience). We were funded to undertake the British Twin Study of Autism and needed, as part of the diagnostic assessment process, to be able to undertake a detailed developmental history with parents or informants together with a direct face-to-face observational assessment. That's how the ADI and the ADOS came together. We worked closely with our international colleague Professor Cathy Lord [ADI-R and ADOS-2 co-author], and other colleagues to design a set of three measures, starting with the ADI and the ADOS, and later, the Social Communication Questionnaire (SCQ).

As a training clinical academic, one of my key motivating principles was, and continues to be, that high-quality, rigorously conducted research should be guided and informed by the needs of individuals and their families, and that the findings should then, in turn, be used to promote improvements in evidence-based clinical practice. Indeed, Mike (Rutter) said that I was always reminding everybody about this! The ADI was designed as a standardised semi-structured interview which means that the trained interviewer obtains actual examples of behaviour from the informant, and then when the interviewer has sufficient information, they make the coding decision for each item in the interview. The added bonus clinically is that the interviewer can support the parent(s) on a sort of developmental journey as the parent(s) recognises that behaviours change and progress over time. This also allows parents to appreciate that their child’s development is not static.

As I mentioned, we developed the ADI and the ADOS alongside each other. The ADI was designed from the interview used in the previous British Twin study, informed by clinical expertise, and the published diagnostic criteria [ICD-10]. Alongside this, in the early days of the development of the ADOS, I remember we had a lot of fun investigating different combinations of toys, activities, and social interactions with the trained researcher to ensure that the child/young person/adult might enjoy the assessment. We also designed a set of graded social presses that can then support the participant during the various tasks and activities. Both measures were piloted, and over time, evaluated with autistic individuals of different ages and different comparison groups including, for example, individuals with learning difficulties. At one point in the late 1980s, during the piloting of the ADI, I visited Cathy Lord in North Carolina to undertake interviews, including parents living in some beautiful rural settings. Cathy recently reminded me about how families would comment on my English accent and some of the things I said. Apparently, on one occasion I complemented a boy on his ‘smart socks’ – not the best expression to use in America. The father then started asking about the IQ of socks… 

The original paper was published in 1989. Then several years later we revised the interview – the ADI-R. It was reorganised, shortened (to reduce redundancy), modified to be appropriate for clinical and research use with individuals of mental ages from approximately 2 years through to adulthood, and linked to both ICD-10 and DSM-IV criteria. The 1994 publication also presented psychometric data for a sample of pre-school children. Over the years there have been many further peer-reviewed evaluations and publications. However, it became clear that to facilitate wider dissemination of the ADI-R and to promote training opportunities, we needed to have the interview, manual and training materials published. Working with [ADOS-2 and ADI-R publisher] Western Psychological Services, some further revisions were made, and Mike Rutter and I developed the training materials and the comprehensive algorithm.  

One of the important aspects of the interview is that I hope it helps parents understand that their account of their child’s development and behaviour is central to the diagnostic assessment process. Unfortunately, however, many parents report that during the multidisciplinary (MD) assessment process they can be asked to repeat their concerns and give the same information all over again to the different professionals they meet. The use of a standardised interview to obtain the information that can then be shared with all professionals should reduce this duplication of effort and help parents feel that they have a voice. 

Another important aspect of the ADI-R is that the focus on different time scales including the period between their child’s 4^th and 5^th birthdays, the current three months and for some items, an overall lifetime summary, can help parents remember and so share with the interviewer how things were and how they are now. This opportunity to focus on particular time periods in my experience helps parents feel listened to and heard.

However, for me perhaps one of the most important points is that we all need to remember is that the processes of recognition, assessment and diagnosis for an individual and their family are actually all interventions. These activities are NOT separate from whatever interventions might be considered, planned for and hopefully implemented. The assessment and diagnostic process itself are interventions.  

And even from before that first diagnostic meeting, as soon as anybody says, ‘I'm wondering if there's a need for assessment’ – as soon as they're saying that to somebody, that's an intervention. So, what we said in the National Autism Plan for Children (NAP-C) published in 2003 was that, ideally, families need support throughout the journey from that point onwards.

Finally, although the ADI and ADOS were not designed to identify the more subtle aspects of the broader spectrum, in the British Twin study and the British Family study these measures, alongside the other assessments undertaken during these studies, enabled us to identify that autism is not one separate, distinct diagnosis but rather part of a genetically influenced phenotype of a broader autism spectrum. Now of course we are used to considering the broader spectrum of ASD/ASC. 

For me it really was rather unbelievable to see these measures ‘take off’. But of course, Michael Rutter was incredibly important worldwide in the development of so many aspects of child and adolescent psychiatry, in establishing the principles of the importance of considering the developmental aspects of mental health, and, of course, in the emerging understanding of autism, the broader autism phenotype, and other neurodevelopmental disorders. Also, Cathy Lord is well known in the US and further afield, through her many research endeavours that have definitely improved understanding of autism. 

Of course, nothing is set in stone. Our appreciation of development and neurodevelopmental profiles will continue to evolve as we understand more. These new insights alongside changes in how clinical services are delivered may well lead on to developments in diagnostic assessment with new and revised measures.   

Jonathan [Green, PACT lead and co-author] is very interested in early parent-child interactions and attachments. I was also keen to develop ways of thinking about and evaluating parent-child interaction. In Manchester, Paediatric Autism Communication Therapy (PACT) originally grew from clinical practice with children and families, into a PhD to pilot the intervention process and identify sensitive measures. Then in 1998 Professor Helen McConachie joined our clinical academic team in Newcastle and amongst her many successful research activities, she collaborated with Dr Catherine Aldred [PACT co-author] and others to design and refine the reliable research assessment measures required to measure aspects of parent-child social communication. These were used in the evaluation of the PACT early social communication intervention. The first successfully completed PACT randomised controlled trial (RCT) was designed as a three-site project with sites in London and the North East, alongside the lead site in Manchester. We in the North East probably had the hardest job in terms of recruiting the number of families needed for the study, because the population in the North East is nothing like that of Greater Manchester or South East London. The three-site PACT collaboration has been working together now for many years – a great tribute to the enthusiasm we all share in the value of carefully evaluating ways of supporting parents to promote their children’s social communication development.

I think the increased awareness of both autism and the autism spectrum is very encouraging. It’s also important that we all understand that many children, adolescents and adults are likely to have an uneven profile of strengths and needs, skills and impairments. 

Another great thing that's happened is an awareness and acceptance that comorbidity and the presence of co-occurring conditions is usually the rule in autism and not the exception. I used to enjoy saying that children have not read the textbooks about separate individual diagnoses…

But you asked my opinion about how does the ADI-R fit into UK care pathways? Currently the demand for diagnostic evaluation has probably never been higher, waiting lists are unacceptably long and in some areas support and interventions are not offered until a so-called definitive diagnosis of autism has been made. In addition, I am aware that some services insist that both the ADI-R and the ADOS-2 are required to make a diagnosis and that there are reports of internal waiting lists for these assessments, which can further add to the delays in receiving a diagnosis. No assessment measure should be used as a threshold requirement for a diagnosis. Assessments contribute to a multidisciplinary diagnostic formulation that informs aspects of the therapeutic and education care plan. Not all children will need to receive an ADOS-2, or their parents take part in an ADI-R. However, although both measures were not originally developed for this purpose, I appreciate that they can be very helpful especially with the assessments of children, young people and/or adults with unusual and/or complex presentations often complicated by co-occurring neurodevelopmental vulnerabilities, and mental and/or physical health problems. I am also aware that training in the use of these two measures can contribute to a comprehensive understanding of the clinical presentations of these conditions.  

Finally, in terms of where a clinical assessment should take place, families need to be supported as near to their own home as possible, preferably in their local MD community service within an integrated community care pathway. However, I also appreciate the value of a network of tertiary services that can support local MD teams by providing second opinions when there might be uncertainty about a diagnostic formulation. Tertiary services can also establish supervision and training networks and facilitate clinical academic research and evaluation developments. 

In the North East of England one of the service developments I’m especially proud of is the Complex Neurodevelopmental Disorders Service (CNDS). This clinical academic MD team is now led by Dr Victoria Grahame. It is a tertiary service, which was originally funded nationally and more recently is funded through the Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust that provides mental health services across the North East. Back in 1995 when I was first appointed to Newcastle University and the then local community mental health NHS trust, I was very clear about the importance of developing a combined clinical and research profile that supported families and local professionals and also through national and international collaborations developed an internationally recognised profile of high quality multidisciplinary research. CNDS and the autism research team at Newcastle University (now led by Professor Jeremy Parr) have, in my opinion, achieved this goal and continue to go from strength to strength. 

Over the thirty to forty years of my career, we've gone from autism being considered a very rare disorder through to now when awareness and understanding of autism as a diagnosis, the broader spectrum, the need to consider the common comorbid, co-occurring mental health problems for children, young people and their families and adults has changed out of all recognition. Indeed, early on in my career I can remember people saying to me, ‘Why on earth do you want to study something that's so rare?’ However, unfortunately, access to a timely diagnostic assessment, support and interventions is problematic in many parts of the UK, and perhaps especially so considering the resource limitations in other parts of the world. The restrictions accessing appropriate resources is a particular issue for adults including those individuals who are coming forward for an initial evaluation in adulthood. 

The other thing that stands out for me is just how significant the voice of the autism community has become, informing both the research questions of real importance to the community and providing insights into the clinical and social needs of autistic individuals. Back in the mid-late 1990s at Newcastle University, our clinical research team’s work with parents of autistic children was seen as unusual. Nowadays working jointly with affected individuals of all ages and their families/support network is, I’m pleased to say, both required and expected. 

Yes, lots. 

First, I’d like to mention the fun and hard work many of us have had over the years, teaching and setting up ADI-R and ADOS training courses. Since the publication of the ADI-R training materials, our main emphasis has been on delivering ADOS-2 training both in the UK and further afield. CNDS continues to run regular training courses in the administration of the ADOS-2 and in training trainers to lead courses in other clinical services and research teams. Outside the North East, for example in Scotland, Helen McConachie and I helped Professor Anne O’Hare and Dr Anne Gilchrist, and many other colleagues, to establish ADOS-2 training first in Edinburgh and then, over time, successfully across Scotland. In Wales with Professor Sue Leekam and the team at Cardiff University, we ran the first ADOS-2 training in Cardiff, which has since been rolled out across Wales. I also supported the first course held in York for deaf and hearing professionals training to use the deaf adapted version of ADOS-2. 

Over the years I have contributed to different training endeavours with colleagues internationally including in Bangladesh, the US, Australia, and Budapest. A highlight for me was the first ADOS-2 course we ran in Budapest with young psychologists who had previously joined a training course in Newcastle. Everyone was so keen for the course to be a success. It took place at an autism diagnostic charity, where the same psychologists stayed up long into the night to produce translations into English for me alongside the recorded ADOS-2 administrations undertaken by the participants on the course. I then felt I too should put in the time necessary to review the participants assessments before each day of the course! Despite everyone’s enthusiasm I later learnt that they had initially felt a bit uneasy about meeting me in person. Their comment was that, actually, when they met me, I was ’just an ordinary person after all!’ Since then, they have stayed in touch with the CNDS team over the years and continue to train colleagues in Hungary. Nowadays they refer to me as their ‘autism godmother’… 

Certainly some of my career highlights have definitely included the privilege of teaching and training students across many different disciplines and in different settings, from undergraduates through to Masters and PhD students. 

Yes, that’s true. I really enjoy helping the next generation build their knowledge, expertise and confidence in their chosen areas of research and clinical practice. This is so critical for the future of our specialties.  

There have also been other research highlights at Newcastle University including a collaborative NIHR programme grant on Transition involving young people with different long-term conditions, one of which was autism. Also, our work on anxiety and autism. With Helen [McConachie], Professor Jacqui Rodgers and Jeremy Parr, we have developed and begun to evaluate different anxiety intervention for children, parents, and also for autistic adults. 

Oh, and one special set of studies I haven’t mentioned has involved collaborations with York University and especially the National CAMHS deaf service led by Professor Barry Wright. Through funding from the Medical Research Council and the agreement of the publishers (Western Psychological Services), we have successfully completed and evaluated Deaf adaptations of the ADI-R, ADOS-2 and the SRS. I have also enjoyed and learnt a great deal through other research collaborations with Barry and research colleagues in York.

Two things really.

First, I hope that I have helped promote the value and importance of listening to families and bringing autism to a wider audience so that families feel heard and appreciated. It is crucial that the needs of autistic individuals and their families are at the forefront of clinical developments and research activities. 

Second, my passion for clinical research, and the purpose of it, which is to improve clinical practice. It is so important that we support the next generations of clinicians and clinical academics across all the relevant disciplines. They are all training and working in very challenging times. This means that they need to be well supported by enthusiastic trainers, as they are the future of our services.