Q 2: Do you need training to use the ADI-R? If so, how can one access training and what does it cost?

Transcription

1 1 Day 1 (February 5 th ) Q 1: Why use the ADI-R? A: The ADI-R is one of a number of available diagnostic instruments used for the diagnosis of autism/asd. It was first developed for research purposes but is also used clinically for the assessment of individuals referred for a possible autism spectrum disorder. The ADI-R is administered by a trained clinician or research interviewer usually to a parent(s) or caregiver familiar with the developmental history and current functioning of the individual undergoing evaluation. It provides a standardised framework for the systematic gathering of rich, detailed descriptions of behaviours at defined times during development. These descriptions of behaviour and development provide valuable clinical information that will contribute both to the multidisciplinary diagnostic assessment process and inform the clinical management plan. The interview allows the clinician to focus on the key domains of functioning necessary for the differential diagnosis of a possible Autism Spectrum Disorder; provides a framework to obtain the detailed descriptions of behaviour and enables the clinician and the informant (often the parent(s)) to consider and reflect on how the individual s developmental profile may have changed over time- from the early pre-school years up to the present time (current functioning). The interview takes between hours to complete but it allows the informant(s) to feel that their concerns have been considered carefully and evaluated alongside the individual s wider profile of skills, strengths, needs and impairments. The ADI- R doesnot however cover different aspects of the wider assessment that might be required, although the information will alert the clinician of a need to consider other assessments- for example an assessment for other specific mental or neurodevelopmental disorders (such as ADHD or anxiety); further assessment of physical health problems, detailed cognitive, speech and language, physical health checks, motor co-ordination, sensory perceptual assessments etc Q 2: Do you need training to use the ADI-R? If so, how can one access training and what does it cost? A: yes, in common with the other semi-structured developmental history interview frameworks described in this series of on-line seminars (namely 3di, DISCO and ADI-R), training is required to gain the expertise to conduct these interviews accurately and to a reliable standard. Training for the clinical use of the ADI-R can be achieved by completing the published ADI-R training pack ( with training manual, DVDs and a test recording to be rated and compared with the consensus coding scores). The training pack can be purchased from WPS anmd other distributers (details available on the web using and ). For training to research standard of ADI-R administration and coding reliability, further training is required to achieve the recommended standard of inter-rater reliability. Arrangements for accessing this training vary across different countries. Several of the UK, USA and European clinical academic centres involved with autism research offer autism diagnostic observation schedule (ADOS) training courses and as required for collaborative research programmes, may offer top-up ADI-R research training opportunities. This information can be obtained from members of these

2 2 clinical academic networks and from the publishers and distributers of the tools. This network in the UK includes for example sites in London, Cambridge, Cardiff, Manchester, Newcastle and Edinburgh. Q 3: Is the ADI-R equally sensitivity for both boys and girls? A: this is an interesting question. At the present time the diagnostic criteria for males and females are the same and Yes the questions and items on the ADI-R are relevant for boys and girls/ males and females. However there is some controversy about whether there is an underdiagnosis of ASD in females and whether the presentation and symptom profiles of males and females may be different. For example some authors argue that the social difficulties may be more subtle in females? Several studies in recent years (see reference lists) have reported findings including ADI-R total, item and diagnostic algorithm scores as part of investigating possible differences in the behavioural phenotypic characteristics of males and females with an ASD diagnosis. Whether or not any modification of diagnostic criteria is required to take into account the needs of males and females remains a significant research question. In the meantime we will continue to use the ADI-R as a diagnostic tool and encourage both clinicians and researchers to make careful evaluation of the robustness of the findings. Q 4: What are the differences between the ADI-R and the 3di? Which is better? A: Over the past two decades the development of ASD specific diagnostic instruments including the ADI-R, the 3di and indeed the DISCO, have allowed clinicians and researchers to make careful and accurate diagnostic assessments according to the internationally agreed diagnostic criteria of ICD-10 and DSM-IV. These instruments all provide information that is relevant for an ASD diagnostic assessment. All require training to learn to administer in an accurate and reliable manner and all are usually delivered in a face to face meeting with the primary caregiver/parent(s). Q 5. I am a newly trained clinician about to embark in work on ASD, would it be better for me to train in the ADI-R, rather than the 3di or DISCO and why? A. In my experience training on semi-structured standardised tools such as the ADI-R provides valuable experience both in learning about autism/asd and how to conduct a detailed interview in a standardised way to cover the domains of behaviour and development required to make a diagnosis of an neurodevelopmental disorder such as autism/asd. The ADI-R focuses on the importance of obtaining detailed descriptions of specific behaviours in the context of the changing pattern of development. Although the ADI-R was not originally designed for use in community settings, the level of attention to descriptions of behaviour at defined times during development results in clinical information that allows the team to understand the parents concerns, the priorities for the family and the evidence from the parental account of aspects of behaviour that indicate whether a possible diagnosis of ASD is relevant or appropriate. This information forms part of the information needed to complete an ASD evaluation, supports the clinical judgement and assists the intervention planning and recommendations. Of course this is just one source of information but the breadth of the

3 3 items and the level of behavioural detail required to code the separate aspects of the behaviours within each domain of functioning means that despite changes to the agreed international classification systems, there will be sufficient descriptions of behaviour when a review or revision of the diagnostic criteria is required. Q 6: Does the ADI-R have to be done in person, or would a telephone interview be appropriate? A: This is an interesting question. There is a recent publication by Ward-King et al (2010) (see reference lists- under domain entitled: ADI-R New Developments) investigating the use of the ADI-R when administered as a telephone interview. This data suggests that the information obtained during a telephone interview is reliable and the authors suggest that telephone administration may be a useful option for researchers. Within our North East Regional second opinion service (the Complex Neurodevelopmental Disorders Services (CNDS), we would usually undertake the ADI-R as a face to face interview. However I have completed a small number of ADI-R interviews over the telephone (usually having previously met the parent(s)). In my limited experience, the semi-structured format of the interview did seem to allow sufficiently detailed descriptions of behaviour to be collected. However the interview takes approx hrs to complete and this feels to me like an imposition on families. Future work on the ADI-R will include identifying the key items for a minimum dataset to achieve a diagnostic algorithm with sufficient sensitivity and specificity to achieve an accurate ICD- 11 and DSM5 diagnosis of ASD. Once this work is complete, it would seem that such an abbreviated interview might provide a suitable set of items to investigate further the appropriateness of conducting the developmental history as a telephone interview compared with the quality of information obtained from a face to face interview. Question 7: Does the ADI-R help the clinician to assess the needs of the individual beyond the diagnostic criteria? The structure of the ADI-R (which together with the ADOS has been described as a gold standard diagnostic tool) focuses in considerable detail on the domains of development and functioning necessary for a differential diagnosis of Autism spectrum disorders (ASD) [previously referred to as the Pervasive Developmental Disorders (PDD)] using the diagnostic criteria for ICD-10 and DSM-IV and now DSMV. This is not to say that the clinical information gathered during the ADI-R does not allow the clinicians to consider the wider needs (including possible additional co-morbidities) of the individual referred for diagnostic assessment. The semi-structured format of the interview provides opportunities for the interviewer to make detailed notes of parents concerns and important descriptions of behaviour that may then highlight the need for further detailed assessments as part of the individual s skills and needs based profile. To date the ADI-R has sections on special skills and other relevant behaviours such as regression, aggression, epilepsy etc. Once the ADi-R is completed, the research and/or clinician would then need to consider what other assessment tools or measures should be completed as part of the comprehensive Multiagency (MA) assessment of the individual and their family.

4 4 Q 8: How should you code questions about regression, when there is a concurrent history of seizures starting? A: ADI-R does include a set of questions (items and 20-28) that allow the trained interviewer to obtain information about possible loss of language and other skills for a period of at least 3 months. These sections are designed to record the behavioural evidence of loss of skills ( as opposed to a more general pattern of variations or ups and downs in an individual s use of their skills) for skills that have been definitely present and used on a daily basis for at least 3 months before the recoding of any loss. Once these definitions have been met, the interviewer should ask about the specific areas of skill loss, record age in months when the loss became apparent and duration etc and then (items18 and 27) explore whether the period of loss of skills is associated with physical illness. It will be of clinical interest to have this information recorded in a systematic manner- for example whether there is a history of loss of definitely acquired skills, the duration of loss and how this does or doesnot overlap with the details about the history of seizures and age of onset. The clinical significance of these accounts needs to be considered by the members of the ASD multidisciplinary team together with the clinical experts (paediatric neurologist) involved in the assessment and management of the seizures. Q 9 : What are the latest developments in the ADI-R regarding its use with DSM-5? Further work is underway to revise the algorithms in line with DSMV and will be needed when ICD-11 is completed. Several clinical academic teams continue to work on updating and considering ways of reviewing the content of the ADI-R for example to meet the needs of much younger children (Toddler version) individuals with a variety of sensory impairments; whether it might be possible to maintain sensitivity and specificity using an abbreviated interview or using different delivery models ( see my answer to question about telephone delivery of the ADI-R). Q 10: can the ADI-R be used to measure change in symptom severity after interventions for ASD? R: The ADI-R was designed to provide the framework for a lifetime developmental history for individuals referred for a diagnostic evaluation for a possible Autism Spectrum Disorder (ASD). It is a detailed comprehensive semi-structured interview that is usually undertaken with the parent or caregiver and takes approx1.5-3 hours to complete. Together with the ADOS (autism diagnostic observation schedule) it has been used worldwide to establish caseness and aid treatment planning. It was not primarily designed as an outcome measure. However all items are coded for current and past behaviour. CURRENT refers to whether or not the specified behaviour for each item has occurred in the past 3 months.

5 5 Q 11: I am a member of an adult ASD diagnostic pathway service. I've been having some discussion with colleagues lately about whether and how the ADI-R is suitable for use with adults. How can it be used if details of early development are not available? This is an important question with increasing awareness about the need for ASD diagnostic pathways for adults (see NICE CG140). The caregiver based developmental history is a key component of an ASD evaluation. For many adults it is possible to identify an informant who is able to give an account of the individual s early developmental history. The ADI-R can provide a useful standardised semi-structured format for collecting this information. The informant would usually be a parent, sibling or other family member. In my experience parents of adult patients can complete the ADI-R interview and appreciate the time taken to obtain an accurate account of their relatives early life experiences and development. If for any reason no parent/caregiver is available, a spouse, partner, key worker, mentor or adult carer could be invited to complete the current functioning items of the ADI-R ( and the current behaviour algorithm). This will provide valuable information which will complement the other aspects of the multidisciplinary assessment: direct observation, measures of cognitive and adaptive skills, clinical assessment of mental state and investigation of other relevant co-occurring conditions. However the current behaviour algorithm has not been empirically validated and so cannot be considered as equivalent to the ADI-R diagnostic algorithm. It is also important to acknowledge that using a diagnostic tool such as the ADI-R cannot in isolation clarify clinical diagnostic uncertainty. The final clinical formulation will require experienced clinical judgement to weigh up the different aspects of the current presentation. A standardized diagnostic tool such as the ADI-R, can provide valuable information collected in a structured format for both a lifetime assessment and a current evaluation and thus support the clinical judgement.

6 6 Day 2 (February 19 th ) Q 1: Will the ADI-R diagnostic algorithm be adjusted to be consistent with the DSM-V? For example, the DSM-V considers sensory issues while the current ADI-R does not include this in the diagnostic algorithm. Another question: Have validation studies been conducted for the ADI-R on non- European based populations? If so which ones? A 1: There are currently no published ADI-R algorithms for DSMV nor for ICD-11(which is likely to be published in 2015). However as I mentioned in answer to a previous question, several clinical academic teams (including our own) continue to work on updating and reviewing the use of all the items included in the ADI-R. We plan to submit for publication a proposed revised algorithm for autism and ASD but this work will then need to be replicated in other samples. For interest our work to date does include several of the sensory items within the proposed algorithm. As you will be aware, the ADI-R does include several items that focus on sensory issues. These are not included in the current published diagnostic algorithms but the items provide the opportunity to gather detailed information obtained in a systematic manner as part of the developmental history. This information is very useful as part of the clinical account of the individual's behaviour and development over time. However for some individuals further assessment of the individual's sensory profile may be needed as part of the multidisciplinary assessment of the skills and impairments based profile for that individual. This additional information will contribute to the diagnostic formulation and individualised management and intervention planning for that individual and their family. Apologies for the delay- I replied to both these questions but then by mistake lost the work! Here is my second version of my reply to your second question. This a very interesting question as it is relevant also to discussions about the cultural considerations for complex social communication disorders such as ASD. However throughout my career I have been impressed by both the wide spectrum of behaviours, skills and impairments seen in individuals with ASD and also the common shared descriptions of the qualitative impairments reported in individuals with ASD from different socio-economic backgrounds,different countries and cultures. At a workshop at IMFAR in 2013, I was encouraged by the agreement amongst those attending the workshop of the usefulness of shared definitions to assist research and clinical understanding. However i do appreciate that there are many cultural aspects to our understanding of the significance of awareness, recognition, diagnosis and intervention planning that have as yet received little attention and need to be carefully investigated to help us understand the meaning of these social communication disorders in different populations (for example see the New Zealand ASD guidelines and Mandell et al 2009). Although I have not been directly involved in any international validation studies, I can report that the ADI-R has been translated into several different languages. There are as far as I am aware, 20 author-reviewed translations. The non-european translations include Arabic, Hebrew, Japanese, Korean, Russian, Brasilian protuguese, Cantonese, Georgian, Mandarin, Serbian. This list may not be comprehensive. I would suggest that any follow-up questions

7 7 about international editions should be directed to Angela Ornitz, WPS Rights & Permissions Coordinator For each of these translations I have learnt a great deal as I have undertaken the back-translations and worked closely with the research teams to ensure that the cultural aspects of for example social use of language and social play are appropriate and relevant for that language. In terms of validation studies, I am aware of the recently published paper by Magana & Smith in the Journal of Developmental Disorders (2013) (perhaps written by the author of this question?) reporting the use of the ADI-R with a population of Latino adolescents and adults with autism. Q 2: You chaired the core working group of the National Autism Plan for Children in Ten years on, and now that the NICE guidelines have also been published, what do you think has been the main impact of this guidance for changing practice? Also what have been barriers to implementing these recommendations? A 2: Yes it is important to review what has been achieved over the last 10 years or so and to now consider what might be the targets and challenges for the next 10 years. It is interesting that this question makes reference to the NAP-C and NICE guidelines, but the reality is that the awareness of the needs and skills of individuals with ASD is an international endeavourfor example the New Zealand lifespan clinical guidelines, the increasing international evidence base for interventions and the growing worldwide political imperative to identify and respond to the ASD needs of adults and older people. Here in the UK the Scottish Intercollegiate guideline network published their clinical guideline 98 in 2007 with recommendations for assessment, diagnosis and clinical interventions for children and young people with ASD. Both the Scottish Executive and Welsh assembly have undertaken needs assessments and highlighted the needs of individuals across the lifespan (see detailed information on the Autism Achieve Alliance and the Wales Autism Research Centre websites). Another really significant event that has already changed practice in England and Wales is the Autism Act (2009) and statutory guideline documents (2010) which have placed a statutory responsibility on all agencies to demonstrate how they are anticipating the needs of adults (defined as from age 14 years upwards) by articulating the types of service provision available in local and regional joint strategic needs assessment documentation (JSNAs). These initiatives together with the NICE clinical guidelines and the NICE quality standard for Autism (published in January 2014) allow services to be audited against the standards and commissioners of services to define how services should be organised going forward. Of course I realise that this sounds all well and good but families and individuals up and down the country indicate that they are not able to access support and services. I still think these clinical and statutory guidance developments should be welcomed but of course the limiting factors include both what resources are available for access to ASD diagnostic assessments and even more importantly what services and support are available post a diagnostic assessment. Across the age range we need to ensure that all professionals have access to regular ASD awareness training. Next, staff in all services but particularly health and mental health services, require the expertise to consider ASD as part of the differential diagnosis when considering the physical health and mental health needs of individuals

8 8 presenting for clinical assessment. How the resources are identified to allow individuals to access the support and reasonable adjustments in education, employment, leisure, housing and clinical care however seems a very daunting challenge for us all. Q 2a: What do you see as the targets and challenges for the next 10 years? A 2a: For me the most important next steps include how to increase the opportunities for involving individuals with ASD and their families and relevant social organisations to drive the research agenda forward. Much progress has been made in the knowledge of ASD but the reality is that we are now much more aware of the spectrum of skills and needs of individuals that receive a diagnosis of ASD. I suppose for the next decade I would want to encourage us all to progress 3 key challenges: (i) promote collaborative basic research to move us on from the multiple but separate explanations of ASD to new research methodologies that promote understanding of these complex presentations; (ii) build sufficient accurate evidence to inform effective intervention planning for individuals and their families at key stages in development ; and (iii) understand how best to disseminate knowledge about effective intervention. Q 3: My questions are what are the timescales from referral to diagnosis and what are your views on parental led diagnostic processes? thank you for your time A 3: I am not quite sure how best to answer this question. Are you asking about the current recommended timelines for the recognition, assessment and diagnosis for children and young people in UK? There are specified recommendations for timescales in the national Autism Plan for Children (2003), the Scottish SIGN guidelines (2009) and in the NICE clinical guideline CG128 (2011). NICE CG128 recommends that a diagnostic assessment should start within 3 months of the referral. The diagnostic assessment process may take a variable length of time especially for those children where the clinical presentation may be less clearcut. The other timeline mentioned in the NICE CG 128 is that families should be offered a follow up appointment within 6 weeks of the end of the assessment to discuss the conclusions and implications for the child or young person. You also ask about parent led diagnostic processes? Parents concerns and where appropriate the concerns of the child/young person should be central to the mulitdisciplinary diagnostic assessment process and inform the assessment work of the autism team. The team then needs to undertake an ASD diagnsotic assessment together with the clinically led assessment of the individual' s profile of skills, strengths, needs and impairments (including the identification of any co-occurring conditions). I hope this answers your question. Q 4: Would ADI-R require a parent/carer who knew the client when very young to give a developmental history when using ADI-R? Sometimes adults do not have parents alive to give that information. A 4: This question links with a previous question that was posted on 5th feb at 3.40pm. Yes it is important whenever possible to identify an informant who is able to give an account of the individual's early developmental history. In my experience when adults come for an ASD assessment there is usually a relative (often parent(s) ) able to provide information about

9 early childhood. Indeed the informant in my experience appreciates the opportunity to review the early childhood, consider particular examples of behaviour and have the time to share any concerns they may have had. I do realise however that particularly for older adults presenting for a diagnostic assessment, this may not always be possible. Background reports can be helpful but may not contain the type of detail that would be useful for an ASD diagnostic assessment. School reports may be available or other healthcare records, for example if the individual was seen previously in child and adolescent mental health or paediatric services. These types of reports are most useful if they include descriptions of behaviours and/or the reports are of more specific assessments such as speech and language or cognitive assessments. 9