1 Q: Is there an algorithms for DCM-V? If so how do I access it? How different is this from the DISCO algorithm that I currently use for ICD-10 Childhood Autism and other subgroups? Are most of the same DISCO items used? A: The DSM-5 algorithm was developed independently of the existing algorithms for ICD-10 Childhood Autism and other subgroups. Items from the DISCO were selected to address each of the behaviours included in the DSM-5 description of ASD. Due to the overlap in descriptions of behaviour for ICD-10 Childhood Autism and DSM-5 ASD, there is a high degree of overlap in the items included in the two algorithms. Indeed, 76 items were included in both the DSM-5 algorithm and ICD-10 algorithms. Nine items were unique to the DSM-5 algorithm, while there were 12 items that were unique to the ICD-10 algorithm. Importantly, the way in which the items are combined is different in the two algorithms. Both the ICD-10 and DSM-5 algorithms for the DISCO were developed to adhere to the two sets of international guidelines. ICD-10 defined a triad of impairments, affecting social interaction, communication, and restricted and repetitive behaviours. In DSM-5, just two domains are defined. The social and communication domains in ICD-10 have been combined into a single domain with a second domain for repetitive and restricted behaviours. These two sets of guidelines therefore describe a slightly different pattern of symptoms, which is reflected in the DISCO algorithms. Research suggests that the DISCO DSM-5 algorithm correctly identifies people who received a diagnosis according to the DISCO ICD-10 algorithm. You can download a paper on this by clicking on the link at the bottom of the downloads page of the Wales Autism Research Centre (www.walesautismresearchcentre.com). Q: Do you think that the DISCO will be able to adapt according to new criteria that will be introduced in ICD-11? A: As with DSM 5 there were no issues in adapting the new criteria using the questions in the DISCO, therefore we would not anticipate problems when ICD-11 is introduced as it is likely to have a similar format as DSM 5.
2 Q: Can the DISCO be used to diagnose adults? Is another informant always needed? A: Its special value is that it collects information concerning all aspects of each individual s skills, deficits and untypical behaviour not just the features of autism spectrum disorder. Information about each item is required for the individual s past and their current picture. Therefore when there is no informant available to give an early history the items of the schedule can be completed for current skills, deficits and untypical behaviour. For this reason, the advantages of the DISCO, compared with other diagnostic schedules, is that the information collected concerning the current picture can provide diagnostic information about a possible autistic disorder. If there is no developmental history this does not allow for a diagnosis using the ICD- 10 classification system and DSM 5 states that symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or maybe masked by learned strategies in later life). The information gathered from the DISCO does allow the experienced clinician to use their clinical judgement to make a working diagnosis in order to plan a management programme. Q: In addition to the previous question, I would like to ask a question about the use of the DISCO with parents of older children or adolescents. My experience is that many parents do not sufficiently remember all the detailed information about the early years, for example about language development and communication of their child as a toddler. To what extent is the DISCO information and classification still useful in these cases? Any other recommendations for these assessments? A: I agree it is often difficult for parents to remember their childs early development and as commented above if the developmental stages cannot be ascertained it is possible to form an opinion on the child's current language development and whether there are any unusual patterns in the development. In my experience parents may not specifically remember when their child acquired language but do remember if it was delayed. The coding system in the DISCO allows for late development even if an age cannot be given. Also the Wing and Gould Autism Spectrum Disorder algorithm does
3 not require information about delays in development but is based on an overall clinical judgement of quality made on the ratings of relevant DISCO variables and not on a preset formula. Q: I was wondering if the DISCO can be used for toddlers younger than three years old. Are the results also reliable for those young children? Because for a lot of items you have to indicate that they are too young (-8). In this context, I have also two other questions about specific items. Part 3, Section viii, B1 Going into the garden alone: If the garden is completely enclosed but the child can play there alone for some time and only occasional supervision is required, can you score this item as achieved? Or can you only score this item as achieved when the child doesn t run away anymore while playing alone? Part 3, Section xiv, A2 Group/team games: children under the age of 5 score always 0 on this item. Is that a problem? Is this item included in the algorithms for diagnosis of autism? A: The DISCO is a structured framework with a special section on infancy that clinicans find useful when assessing toddlers. All diagnoses should be based on taking a developmental history together with observations of the child in structured and unstructured settings. Therefore the DISCO is only part of the process. There will be questions that are not applicable as the DISCO covers all ages and all levels of ability. However the ratings on social interaction with adults and peers and imagination can be coded even in toddlers. Also repetitive stereotyped patterns of behaviour and respones to sensory stimuli are not age specific. Therefore it can be used reliably with toddlers. With regard to your specific questions I suggest you email me separately. Q: In North Wales we are currently introducing the ADOS Toddler Module for identifying cause for concern re ASD. However, this is not yet cleared for diagnostically defining toddlers more specifically. Please would you outline how the DISCO could be used to complement use of the Toddler Module ADOS? It would be helpful to clarify the lowest age range to which the DISCO can be applied and the
4 degree to which the DISCO can give diagnostic clarity in both research & clinical settings. A: I have partly answered your question regarding the use of DISCO with toddlers. I think it would be excellent to combine the ADOS Toddler Module together with the DISCO, as I stated diagnoses has to be a combination of taking a developmental history and observation in both structured and unstructured settings. Q: When either a parent is unable to recall any of the developmental stages that have to by certain ages or their is no parent or other person to give a history and other methods of collecting data school reports, GP do not help etc. Could a diagnosis still be made on current behaviours? A: if there is no developmental history this does not allow for a diagnosis using the ICD-10 classification system and DSM 5 states that symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or maybe masked by learned strategies in later life). The information gathered from the DISCO does allow the experienced clinician to use their clinical judgement to make a working diagnosis in order to plan a management programme. Q: Can you say more about the way that you designed the DISCO to include developmental level or stages and how to use this information in relation to current and atypical behaviour? A: The Handicaps Skills and Behaviour Schedule was the original semi structured interview used in the Camberwell Epidemiological Research in the 1970s. This was a scheduled designed for research which was the pre cursor of the DISCO. For clinical purposes a more detailed developmental profile was needed. The current format of the DISCO is the collection of information relating to the individuals current level of functioning, were there any developmental delays and any unusual or atypical behaviours relating to each developmental domain. The whole picture then enables a clinician to formulate a diagnosis.
5 Q: Can we access a computer programme for electronic coding of the DISCO? A: Yes, there will be a computer programme for electronic coding of the DISCO which will be available for accredited DISCO users who have completed the full DISCO training. This is imminent. Q: The DISCO supports the Wing & Gould triad of impairments which includes social imagination as central. Do you still think that imagination is a central part of the diagnosis of autism, and if so, why? A: Our Triad of Impairments included social interaction, social communication and social imagination which was strongly associated with a repetitive, restricted pattern of behaviour. We have specifically identified a lack of social imagination as part of the autism spectrum as imagination in a social sense is fundamental to understanding and knowing what goes on in other people s minds and imagining one s self in someone else s shoes. Imaginative activities in childhood are the pre cursors of the ability to predict a range of possible consequences arising from past and present events. That is the possible answers to the question what if? People in the spectrum often have imaginative activities but it is the way they use their imagination in a social sense that is important. Creativity could be thought of as imagination but this is not what we think of as social imagination. Questions in the DISCO tease out whether a person has social imagination Q: I saw that you wrote specifically about social imagination, and not imagination in a general sense. Still, I think that is a pretty poor term, as it seems to say little about the real issue, which probably is the inability to give fast, creative social responses. Such issues are not correlated to restricted behavior patterns in my research at least. Instead, restricted behaviors (obsessions) seems to have strong emotional links, and thus have no link to imagination (social or not) at all. Also, if I remember it correctly Simon Baron-Cohen has general items about lack of imagination, and these had no correlation at all to Aspie Quiz scores. A: We are both very interested in this issue, and particularly in your claim that there is no link between restricted and repetitive behaviours and social
6 imagination in your research. Can you give us a bit more detail about this and the reference to your study? For example have you explored the different types of restricted and repetitive behaviours in addition to obsessions? We are intrigued by the suggestion that social imagination might be interpreted as the ability to give fast, creative social responses. Q: I would like to know to what extent the use of the DISCO has penetrated the field of autism, i.e. in which countries is it used; and by how many people, both researchers and clinicians? A: Participants have attended training courses from: Saudi Arabia, South Africa, Argentina, Spain, Maderia and the Scandinavian countries. Training courses have been carried out in Sweden, Denmark, Japan, Netherlands, Australia, Singapore, Canada and Ireland. Courses are currently being carried out in Sweden, Japan and the Netherlands with translated versions of the DISCO. There has been considerable interest in training from the USA. The overall number of accredited DISCO users is 1443. Q: Am I right in saying that they are very interested in introducing DISCO in China? Of course, you will need to allow for considerable cultural differences. Direct eye contact is frowned on in certain Asian nations, for example, making lack of eye contact a distinctly unreliable 'indicator' of autism there. A: There has been interest in carrying out DISCO training in China, this is something we need to explore further. In response to the second part of your question about cultural differences, research gives us some interesting insights on this. A study by by Kartner et al (2010) reported in the journal Child Development, studied eye-gaze contingencies in mother-infant interaction and found differences between mothers and infants (aged up to 3 months) in Cameroon vs German cultures. Although there was less direct eye gaze in the Cameroon culture however, the authors reported synchrony obtained through regulation in musical exchanges and repetitive rhythm of movement. Another interesting study on the development of pointing (Liskowski et al, 2012) reported in Cognitive Science studied 10-14 mth-old infants in Japan, Bali, Papua New Guinea, Peru, Mexico, Canada and found no cultural differences. Infant pointed
7 with similar frequencies in all cultures, suggesting universal developmental timetable for typical development. Points about the cultural differences is very important and we are very aware that in translation many of the questions would need to be modified. The DISCO has been translated into Japanese and we went through a similar exercise with our colleagues in Japan. Q: I would like to know if there is any DISCO training planned for Melbourne, Australia in the near future or is the UK the only option for training? Given the layers of complexity in adult diagnosis particularly and the increasing demand for adult assessment, the DISCO would greatly assist my clinical practice. A: As you will remember in the past there has been occassions when we had planned DISCO training in Australia. However due to all sorts of reasons this did not happen. This is something perhaps we could reconsider as the DISCO would be very appropriate for adult diagnostic assessments. Q: I have not been trained to use the DISCO but my suspicion from the outside is that it would be a particularly valuable tool for use in research, where there is a lack of instruments which capture complex patterns of behaviour. Instead autism studies rely on quick measures like the SCQ or AQ which provide simple black and white outcomes based on whether participants meet a cut-off or not. Even the ADOS and ADI-R - both fantastic tools - boil autism down to the core deficits and skim over some of the associated characteristics (e.g. sensory issues), meaning that these can be ignored in research. Can you comment on whether you feel the DISCO would be useful for research studies and, if so, how researchers could access DISCO training and resources? A: You are right that we need more research using the DISCO! A huge benefit for researchers is that it was originally designed to measure the spectrum concept, and its content allows researchers to look simultaneously at broader (core and associated symptoms) and narrower (algorithm based) definitions. Items from the DISCO have been used to generate a wave of new interest in repetitive behaviours, sensory regulation and catatonia. Recently there has also been a move to develop shorter measures and parent or self report measures drawn from the DISCO items. But there
8 are many other aspects that need further research- for example research in brain imaging and genetics has not yet taken advantage of the benefits of accessing information about the pattern of complex behaviours documented from the DISCO. So although there is a group of international researchers working with the DISCO, there need to be more! It would also be good to see datasets developed and shared in which new questions can be answered. If you are a researcher who would like training to use the DISCO for research, please get in touch with Judith Gould or me directly. Q: As we know that comorbid conditions are frequent in individuals with ASD and present significant management challenges I was wondering if you could explain to what extent does DISCO assess the presence of comorbidities? A: There are questions in the DISCO covering other related conditions. Algorithms are not provided for these additional conditions, but there are counts of items which prompt the clinician to ask further questions to explore these additional patterns of behaviour. These are Attention Deficit Hyperactivity Disorder, Developmental Coordination Disorder, Tic Disorders including Tourettes Syndrome, Catatonia and Pathological Demand Avoidance. There is also a part in the DISCO covering Psychiatric Disorders and Forensic problems. Q: I think there are other important comorbidities that are seldom researched or checked. For instance, there is a profile of forming very strong bonds with a few people that in DSM are characterized as "dependency disorders" (don't remember the exact term). These sometimes cause stalking, problems to go on with life, and in severe cases, suicide. The other side of this are strong feelings of revenge and characterizing people as enemies for a long time (sometimes for life). I think these issues are very important to understand in relation to ASD and relationships, but I seldom see this discussed. A: I agree there are other important comorbidities. An increasing number of professionals attending our DISCO training work in Forensic Psychology/Psychiatry, we have opportunity to discuss the issues you have highlighted and we attempt to differenitate for example Schizoid Personality Disorder with Asperger Syndrome/High Functioning Autism. Often an ASD diagnosis is more appropriate and helpful.
9 Q: The full DISCO interview includes a number of sections related to associated features such as adaptive behaviour, emotions, maladaptive behaviours, motor skills, sleep problems, pattern of activities (overactivity) etc. Can you tell us more about why these sections are included in the DISCO and how useful they are for practice? What do we know from research about how these associated features are related to the core features of autism? A: The additional sections were considered important clinically as these describe the individual s pattern of needs which are as important as having a diagnosis. The role of associated features has rapidly gained research attention as recognition of comorbidity and overlapping conditions has grown. For example there has been a fast growing literature in the last 5 years on the relation between sensory behaviours and repetitive behaviours and on anxiety in relation to core ASD symptoms. Overlapping symptoms of hyperactivity and maladaptive behaviour are also being reported in studies on children with ADHD and/or ASD. Most research so far has used separate measures to capture these associated symptoms, and this can have disadvantages due to different measurement characteristics. The DISCO works well to facilitate research of this kind because it already collects due this information on associated features. Rachel Kent at Cardiff University has made a detailed analysis of these associated features in the DISCO as part of her PhD. She has been testing the psychometric integrity of the different sub-scales for associated features within the DISCO and is examining in detail the contribution that these associated features make to the core diagnostic domains. Kent, R. G., Gould, J., Wing, L., LeCouteur, A., & Leekam, S. R. (May 2011). What role does atypical sensory processing play in the core features of ASD? Oral presentation International Meeting for Autism Research (IMFAR). San Diego, California. http://www.autismrpphub.org/articles-resources/a/relations-among-restricted-andrepetitive-behaviours-anxiety-and-sensory Download here for copy of Lidstone, Uljarevic et al., (2014); Relations among Relations among restricted and repetitive behaviors, anxiety and sensory features in children with autism spectrum disorders. Published in Research in Autism Spectrum Disorders, Volume 8, Issue 2, Feb 2014, Pages 82-92
10 Q: Is it possible to diagnose PDA using the DISCO? And can you clarify the 17 Sub Sections - what is the score for PDA to be present out of 17? A: Pathological Demand Avoidance syndrome (PDA) is now considered as a subgroup on the autism spectrum. In the DISCO there are specific questions relating to this pattern of behaviour. Therefore using the DISCO enables the clinician to recognise this. You are correct there are 17 questions not sub sections in the DISCO which relate to the PDA pattern of behaviour. There is no score as such but having a number of these alerts the clinician to explore this diagnosis. Research has been carried out by Liz O'nions using the DISCO questions together with the work carried out at the Elizabeth Newson Centre and she has produced a questionnaire called 'Extreme Demand Avoidance Questionnaire (EDA-Q)'. One of her papers is currently in press in the Journal of Child Psychology and Psychiatry. For further information on PDA you could contact Liz on her website. The importance of understanding this pattern of behaviour is important for the management strategies in dealing with such individuals as these strategies differ from that of an autism spectrum disorder. It is important to recognise that this is a separate subgroup. Q: If I use the DISCO DSM-5 algorithm, is it possible to still consider a diagnosis of Asperger syndrome for an individual by using the DISCO? A: In DSM-5, all of the subgroups included under pervasive developmental disorder in ICD-10 (including Childhood Autism and Asperger Syndrome) are all included under the umbrella term of Autism Spectrum Disorder (ASD). The DISCO DSM-5 algorithm reflects this in that according to the algorithm, the only outcomes are ASD or not ASD. However, the DSM-5 guidelines recommend the use of specifiers to supplement the diagnosis of ASD, providing a more detailed description of the severity of an individual s symptoms. When using the DISCO, I would always recommend that a more detailed description of an individual s strengths and needs is required in addition to a diagnostic label. In this context, it may be helpful to say that individuals has ASD with an Asperger-like presentation, although it is also important to be clear what this may mean. Finally, it is possible to run more than one
11 algorithm. In addition to the DSM-5 DISCO algorithm, you could also see whether an individual would meet criterion for a diagnosis of ICD-10 Asperger Syndrome as well as Gillberg s Asperger Syndrome using algorithms from this DISCO. Q: Prof. David Skuse said that the 3di is a more gender-neutral instrument than the ADI-R. Does the use of the DISCO have any benefits for eliciting information about the female presentation of ASD? What advice can you give to clinicians about how to avoid being misled by superficial sociability? A: All the current diagnostic interviews tend to use examples of behaviour that are male oriented. The behaviours in girls are different in that they appear more socialable. They learn to act in social settings and their presentation does not fit in the International diagnostic systems. Examples of different manifestations of behaviours are currently being included in the DISCO to take into account the female presentation of an autism spectrum condition. One area of difference is in types of special interest. The girls collect information on people rather than things. Hobbies such as compiling facts on people s name, colour of hair, celebrities are more popular with girls. Careful questioning on interest and routines is important. We need to move away from the narrow male stereotype of what constitutes special interests and explore the intensity and duration of the activities engaged in girls. Clinicians needs to be aware that girls are often passive socially, copy and imitate others, masking their symptoms. They learn the social rules through their intellect rather than by instinct or intuition. It is only through careful questioning that the true nature of their difficulties become apparent. Q: What degree of specificity using Disco for a differential diagnosis in the vast heterogeneity of language disorders and communication between autism and other developmental disorders? A: The DISCO has many questions on both the undestanding and use of language and although there is overlap in the language problems in autism with other language disorders we do concerntrate on the pragmatics i.e. the social use of language. Also there is a section on non verbal communication which also captures the pragmatics of language. As there is a broad range of questions on communciation and language
12 there is the potential to be able to discriminate between different types of language problems. In our research we have included a group of children with language impairment and found differences in group comparisons in diagnostic outcome. Essentially to have a diagnosis of an asd it is not only language we are looking at but also social interaction and social imagination together with the repetitive stereotyped patterns of behaviour. If a child has a language impairement without the rest of the TRIAD then a diagnosis of an asd would not be given. In our early publications in 2002 we had a comparison group of children with language impairments without autism. The reference is: Leekam, S.R., Libby, S., Wing, L., Gould, J. & Taylor, C. (2002) Diagnostic Interview for Social and Communication Disorders: Algorithms for ICD-10 Childhood Autism and Wing and Gould Autistic Spectrum Disorder. The Journal of Child Psychology and Psychiatry, 43, 327-342 Wing, L., Leekam, S.R., Libby, S., Gould, J. & Larcombe, M. (2002) Diagnostic Interview for Social and Communication Disorders: Background, Inter-rater Reliability and Clinical Use. The Journal of Child Psychology and Psychiatry, 43, 307-32 Q: From the description it seems that much of the validation of DISCO have been done on small, clinical populations, and that it haven't been validated on BAP or the general population. Evidence from comparing the AQ test in the general population with Aspie Quiz (which primarily is a neurodiversity-test for traits, and doesn't measure disability at all) suggests that using many disorder-related questions doesn't give better validity than using a trait-based approach. In fact, the data suggested that Aspie Quiz made better judgements on diagnosed participants than the AQ test, and especially didn't have any gender bias. It seems pretty interesting that Aspie Quiz is the favored test by many undiagnosed people in the autistic community when it was designed entirely to measure traits and not disabilities. I would find it interesting to analyse relevant items from DISCO and comparing them to the traits defined in Aspie Quiz. Especially since DISCO seems to be a little broader than the AQ test.
13 A: You raised quite a few points so we hope we've addressed them all below. You raise an interesting point about the range of behaviours covered in diagnostic assessments, and whether these tools focus specifically on 'symptoms' of a condition. The DISCO has over 300 items that cover a broad range of items measuring an individual's development, skills as well as untypical behaviours. This allows the DISCO to create not only a profile of an individual's difficulties, but also importantly, a profile of their strengths. This detailed profile can aid clinicians in making an appropriate diagnosis, but may also guide recommendations for support and if appropriate, interventions. It is therefore highly likely that the DISCO may measure some of the "traits" or behaviours that are measured with the Aspie Quiz, which means that it could be interesting to compare the two measures. However, the DISCO is semi-structured interview and so has a very different format to self-report questionnaires. These different formats may make it difficult to compare the Aspie Quiz and the DISCO directly. We are in the process of developing self-report questionnaires as part of ongoing research. So far we have used parent-completed questionnaires in the general population. For example, the Gateshead Millennium study and the Tees Valley Baby Study used the RBQ-2 (developed from the DISCO) to measure repetitive behaviours in a large community sample of 2-year-olds (Leekam, Tandos, McConachie, Meins, Parkinson, Wright, et al., 2007). Researchers at the Wales Autism Research Centre ) have also adapted the RBQ-2 so as to be suitable for adults, and have unpublished data both using this questionnaire (RBQ-2 Adult version) developed by Sarah Barratt) and a second questionnaire developed using DISCO items measuring sensory symptoms in ASD (the Sensory Preferences Questionnaire; Rachel Kent). As for testing the DISCO in research, you are correct in that the DISCO has not been specifically tested in the BAP. In our own published work we have used the DISCO across three groups of individuals: 1) individuals recruited specifically for having a diagnosis of ASD; 2) individuals with other clinical conditions (but not ASD); 3) individuals with no clinical diagnosis, considered to be 'typically developing'. Professor Terry Brugha has used the DISCO in an epidemiological study of adults and Professor Christopher Gillberg has used the DISCO in an epidemiological study of children in the Faroe Islands
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