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Q&A with ADOS-2/ADI-R trainer Carol Stott: Moving toward a more diverse & inclusive approach to understanding the autistic mind

We spoke with trainer Carol Stott about the new ADOS-2 and ADI-R combination course she will be running for Hogrefe, her experiences as a trainer, and the constantly shifting world of autism diagnosis.

Carol Stott

Chartered Psychologist (CPsychol), Chartered Scientist (CSci), and a member of the British Psychological Society. Carol trained in administration and coding in the ADOS and ADI-R to Research Reliability at the University of Cambridge in 1999. Following accreditation, Carol used both instruments in research projects at the University of Cambridge Department of Psychiatry over several years. In 2004, Carol trained at the University of Michigan Autism & Communication Disorders Center (UMACC) as an ADOS and ADI-R trainer. Since that time she has delivered ADOS and ADI-R training regularly in the UK and overseas.

Your bio as a trainer, practitioner and academic is very impressive. Why have you chosen to continue training those new to autism diagnosis?

Over many years, much of my clinical work has been with children and adults who present with neurodiverse  / neurodevelopmental conditions. In this time it has become clear that these presentations are more prevalent than we previously understood and services have come under increasing pressure to meet the growing need.

Whilst practitioners internationally are looking to deliver efficient diagnostic services, it remains crucially important that the processes we use remain reliable, valid, thorough and accessible to service users and practitioners alike. Given my own background in clinical psychology, epidemiology and measurement it seemed important to support my clinical work with consideration of how best to encourage and develop these practices. Using measures such as the ADI-R and ADOS-2 and more particularly, training other practitioners in their use, has for me been an important way of doing this, and one that has also kept me abreast of recent developments and approaches in the broader context. 

You have been in the diagnostic assessment “business” for 20+ years. What are the major changes or shifts you have seen in that time?

One of the most striking changes over the years has been the increasing need for diagnostic services in the area of neurodevelopmental assessment and diagnosis. While prevalence estimates of autism/ ASD in the mid-1990s were in the region of 4-6 in 10,000 people, more recent figures have suggested that around 1 in 36  children in the US, for example, may present with an ASD[1]. This has obviously led to greater interest in how to accurately describe and identify the various ways in which ASD presents, and perhaps more importantly how to develop appropriate ways of supporting autistic people in ways that directly involve them in decision making. 

Two important changes that have shifted our practice in recent times are (i) our improved knowledge about the different ways in which autistic girls and women present, together with (ii) increasing awareness of the autistic person in the criminal justice system. Much remains to be done, but it seems that we may be moving away from modelling our services on the needs of ‘The Man on the Clapham Omnibus’ to a more diverse and inclusive approach to understanding the autistic mind.

Could you tell us a bit about the importance of training in both the ADOS-2 (diagnostic) and ADI-R (interview)?

One of the most important requirements of an inclusive diagnostic assessment is that the voice of the autistic person is heard and supported. The ADOS-2 and ADI-R, when used in diagnostic practice, provide a firm basis from which this can follow. Given the opportunity it provides for direct engagement, the ADOS-2 begins the process of allowing practitioner and participant to explore the basics of a social encounter, in a way that minimises explicit social challenge. The ADI-R extends this process by gathering the perspective of someone who knows the participant well and who is able to give a sense of their day-to-day presentation.

Historically, the ADI and ADOS were designed explicitly to complement each other. To this end they apply similar measurement principles, similar language and a similar theoretical model; factors which lead clinically to efficient parallel administration and to integrated training.  

Multidisciplinary teams have so many different roles and professions included these days. Is the combo course appropriate for anyone who’s part of an MDT? What might be important to consider?

When considering the joint ADI-R / ADOS-2 course it will obviously be important for delegates to think about how they ultimately intend to use the measures. Used diagnostically they each contribute to an important part of the diagnostic process as well as lending themselves well to use in other areas by a range of professionals in the field.

As far as diagnosis is concerned the current situation in the UK is that relatively few professional groups have a clear diagnostic remit in their own right, while a range of others are important in contributing their specific expertise to the full diagnostic picture. Actual practice varies to some extent from one area to the next according to local governance, availability of services and best practice guidelines such as NICE[2] / SIGN[3] and NHS England[4] but regardless of final diagnostic remit there is increasing use of MDTs to provide input at all stages of the diagnostic journey, from early pre-screening to post-diagnostic follow-up and therapeutic intervention. This means that familiarity with core diagnostic measures is important to a range of professionals.

Any other words of wisdom for those new to autism diagnosis or those considering training?

Be confident in what you know, acknowledge what you don’t know, be open to new ideas – be they seismic shifts or small changes – and most of all after all the training, listen to the person you’re sitting with. 

One of my most influential supervisors told me many years ago “…by all means read the books, present at conference, write the papers, but when you need to know what’s happening for the patient, ask them, and listen to what they say. They’ll tell you what’s going on”.

References

[1] https://www.nimh.nih.gov/health/statistics/autism-spectrum-disorder-asd#:~:text=Across%20the%20CDC%20surveillance%20sites,all%20racial%20and%20ethnic%20groups.

[2] https://www.nice.org.uk/guidance/cg128; https://www.nice.org.uk/guidance/cg142

[3] https://www.sign.ac.uk/assets/sign145.pdf

[4] https://www.england.nhs.uk/learning-disabilities/about/autism/

Train in ADOS-2 and ADI-R