Emma Woodhouse Hi, I’m Emma Woodhouse.  I’m going to talk to you today about autism   assessment and diagnosis. I’m a neurodevelopmental  specialist and I’m also an ADOS and ADI Trainer,   so they’re tools used in the  assessment process of autism. So, before I start talking about the  assessment process, I just want to acknowledge   that there’s lots of debates and conversations  around terminology in relation to autism.   So, you may hear people talking about autism,  autism spectrum disorder or condition,   the concept of neurodiversity, which is often  used to describe the natural variation in   brain development and how we  perceive and understand the world.   So, there’s lots of discussions  around language and terminology. What I’m going to talk about today is the  assessment process in relation to the medical   model. Now, I’m aware lots of people don’t like  the medical model because it has a tendency to   focus on difficulties, on deficits and talks about  autism in terms of a disorder. But as that’s the   way that it’s primarily diagnosed, certainly  in the UK, in relation to the medical model,   that will be the focus of today, although these  conversations around language and terminology   and how autism is conceptualised,  is a really important conversation. So, one of the things I want to start by – to talk  about is the diagnostic systems and what’s used in   the UK. So, as you are probably aware that we have  the two different diagnostic systems, the DSM and   the ICD. Now, in the UK, at the moment we have  different services using different systems and   there are three different systems in use in the UK  at the moment. The DSM-5 or DSM-5 Text Revision,   and then, we also have some services using  ICD-10 and some services using ICD-11. Now,   fundamentally, what we’re assessing in autism  is very similar across the different diagnostic   systems. But I think it’s important to  mention this, because there are some   differences and there are some differences  in the labels and diagnostic terms, as well.  So, when DSM-IV moved to DSM-5,   they got rid of all of the subcategories  of autism, so autistic disorder,   Asperger’s CDD, and the, sort of, subcategories  and separate diagnoses. They also got rid of   Rett’s from the DSM and DSM-5 was then replaced  with one overall autism spectrum disorder. So,   that’s what’s in use now and DSM-IV is no longer  in use at all, so those terms aren’t used anymore. In terms of ICD-10 and ICD-11, there’s a – sort  of, currently, in the process of moving from   ICD-10 to ICD-11. So, we have both systems in use  in the UK at the moment and the subcategories of   autism that are, sort of, separate in ICD-10,  they will include childhood autism, Asperger’s   syndrome, atypical autism. So there’s a list of  separate diagnostic labels that are used under   ICD-10 and they are still being used by services  who are using ICD-10. So, when people say,   “Oh, does Asperger’s exist anymore?” Well, the  answer is not in DSM-IV – sorry, not in DSM-5,   not in ICD-11, but it is still being diagnosed for  services using ICD-10. So, sometimes that causes a   bit of confusion. ICD-11 has followed similar  change, in that it’s collapsing all of those   separate diagnoses into one overall category of  autism spectrum disorder. So, if you’re confused   about the different labels, this might be why,  and it depends on the system that’s being used. Of course, fundamentally, what we’re looking  at, whether we’re using ICD-10, ICD-11 or DSM-5,   whichever system is being used, we’re looking  at assessing social communication and social   interaction, and also what’s often referred  to as “restricted, repetitive patterns of   behaviour, interest or activities.” So,  fundamentally, we’re always looking at   social communication and we’re  looking at use of language,   we’re use – looking at non-verbal  communication. So, modulation of eye gaze,   integration with other communicative strategies,  like facial expressions, gestures, body language. We’re always interested in looking at play  and imagination, sharing of interests,   sharing of enjoyment, social use of language in –  and use of language in reciprocal conversations.   We want to know about people’s understanding of  emotions, both in themselves and in other people,   and friendships and relationships, as well.  So, that’s always going to be a consideration,   irrespective of the diagnostic system being used.  We’re also looking at things like  need for routines and, kind of   – and not just a preference routine, but  real difficulties with very minor changes,   really struggling with small changes in  daily routines, any rituals, sort of, intense   interests or focused interests, preoccupations,  passions. Any repetitive play or actions or speech   and, of course, many autistic individuals  will experience differences in sensory   processing. Again, it’s not just about, sort  of, preferences like, “Oh, I don’t like the   smell of fish,” or “I,” you know, “don’t like  certain really rough materials.” You’re looking   at, kind of, significant sensory processing  difficulties that might impact on somebody’s life. So, when we’re assessing these different aspects,  characteristics that are associated with autism,   we’re interested in assessing  how they cluster together,   we’re – and in the medical model, for a diagnosis,  we need to have evidence of clinically significant   impairment in terms of functioning. So,  technically, under the medical model,   if you have someone with lots of these  characteristics that cluster together   in a way that might look like autism, if they  don’t have clinical impairment, technically they   would not meet diagnostic criteria for an autism  spectrum disorder. Some people disagree with that,   but in the medical model impairment  is part of the diagnostic criteria. Now, because autism is a neurodevelopmental  condition, we would expect it to be present since   early childhood, which means that we are always  interested in assessing that early neurod – early   developmental period, you know, particularly  the first few years of life. Because if there   is an underlying autism diagnosis, then you  would expect to see qualitative – at least   qualitative differences and perhaps even  impairment in the early years, as well. Now, one of the changes from DSM-IV to DSM-5,  and this is also in the change from D – ICD-10   to ICD-11, is that the newer diagnostic  systems recognise that symptoms will be   present from early childhood, but they may not  fully manifest until demands exceed capacity.   So, it’s not unusual to see people presenting  a bit – to services a bit later. So,   perhaps later in primary school or  secondary school, or into adulthood,   because it may be that although there were  qualitative differences in their development   early on, it may be that the, sort of, impairment  or the difficulties they’re experiencing may   not fully manifest until they get to a point in  their life where the demands exceed the capacity. So, that’s why we always have to think  about the early developmental period   and recognise that if people are presenting to  services later, it may be that their differences   in early childhood were more subtle or they  were masked by particular strategies, or   they had – you know, they might’ve had a lot  of structure around them that enabled them   to get on pretty well until they reached this  point where demands exceed capacity. So, we have   to explore that early developmental period really  carefully when we’re doing an autism assessment. We also always have to think about differential  diagnoses and think about whether there might be   other factors that we need to consider  in terms of mental health conditions,   in terms of neurodevelopmental conditions  that might be co-occurring or that might   be an alternative explanation. So, that can be  quite a complex process, sometimes, unpicking   whether you might have autism and an additional  condition or conditions, or whether we’re having   to think about another condition explaining  what we’re seeing during the assessment. One of the things that can make autism so complex  to assess is that there is not a single symptom   that you can see on its own and say, “Well,  we’ve seen that, they must be autistic,” or   “they must have autism,” and there’s – the  flipside is, there’s not a single symptom   that means you can rule out autism. I mean,  sometimes people think there are symptoms like,   oh, well, that person has friends, so they  can’t be autistic. But it’s – when you   know the diagnostic criteria very well, you  understand that it can – autism can present   in lots and lots of different ways and it’s  always about clusters of characteristics.   It’s not about single – a single symptom on  its own ruling autism in or ruling autism out,   and that’s what – one of the things that  makes – can make it quite complex to assess. Bear in mind, as well, that every single thing  that we look at when we’re assessing autism,   you can see as part of variation  in general development, you know,   you see in the general population,  and you can also see as part of   other neurodevelopmental conditions or mental  health conditions. So, if you think about   something like modulated eye ga – you know,  well-modulated eye gaze and you’re thinking   about the way in which somebody uses eye gaze  in interactions, the way they integrate eye gaze   with other communicative strategies and you’re  assessing that, there are multiple reasons why   people might have eye contact that’s different  from what you might expect. Now, that might be   related to autism, but it might also be related  to anxiety, to depression, to ADHD, to psychosis.   There’s lots of different reasons why you  might be seeing differences in use of eye gaze. So, part of the assessment process involves  teasing apart those nuances and trying to   make sense of whether we’re looking at  autism, an underlying autism spectrum   condition or diagno – or disorder,  whether there’s other things going on,   or whether there’s something bett – that  can better explain what we’re seeing,   and that can be quite complicated. It can also get  more complicated as children get older and they’re   developing additional mental health complexities,  as well, because there’s more to unpick. So, part of the assessment process, we’re always  looking at different sources of information. We   can never, ever diagnose on one diagnostic tool  or one – just one source of information alone.   It’s always a case of drawing together information  from different sources. So, one of the key parts   of doing an autism assessment is trying to do a  developmental history with a parent or caregiver   or a family member, where we try to ask lots of  information about the early developmental period   and specifically get details around social  communication and social interaction and   interests and behaviours in the early years of  life. So, that’s a really important consideration. We also try to do an – a direct observational  assessment that’s – I’m going to talk about   the ADOS shortly, but working with – doing  assessment with the person directly to see what   we’re observing and doing a nu – sort of, nuanced  assessment of social communication, reciprocal   social interaction and interests and behaviours  in terms of what we’re directly observing.   We’ll also try to get additional information. So,  for example, if you’re working with young people   from school, that might be questionnaires from  school or speaking to Teachers or observation,   so we can understand how that person  gets on in different contexts, basically.   And we need to think about differential  diagnoses in terms of what there is to unpick.  Now, if you’re looking at a specific  additional condition that has a clear onset,   so say you’re looking at something like  an eating disorder, we know there’s quite   high rates of eating disorders associated with  autism. You might have somebody currently who   is showing lots of characteristics associated  with autism, but it might be a bit tricky to know,   well, is this more about autism or is  this about their eating disorder or is   this about a combination? And sometimes  that can be quite complicated to unpick. If there is an, sort of, onset of the eating  disorder, say for example, you’re working with   a 16-year-old and their eating  disorder started to emerge around 12,   you – what you’d be really interested in unpicking  is whether their current characteristics that   you’re seeing currently, whether they started at  the same time as the eating disorder or around the   same time as the eating disorder, or have they  been present right from the beginning of life?   Because if they were – been present right from  the beginning and they existed before their   eating difficulties, or their eating disorder  emerged, then you might think well, actually,   this can’t all be explained by the eating disorder  because it’s been there from the beginning.   So, that’s one of the things that we think about  in terms of unpicking differential diagnoses. Now, when it becomes really complicated,  of course, is when you have – when the   complicating factors might be present in the  early developmental period. So, if you’ve got   very significant developmental – early trauma, for  example, or if you have a, you know, brain injury   or if you’ve got another neurodevelopmental  condition or a genetic condition, sometimes   these questions can be more complicated. If the  ques – the thing that you’re asking about also   started in the very early developmental period,  that can be quite complex to unpick, sometimes. So, this is part of an overall assessment for  autism and then, we use this information together   and we think about this in relation to whichever  diagnostic criteria is used by the service. So,   whether that’s DSM-5 or ICD-10 or 11, and so that  we can be really clear this is how we came to our   conclusion, this is where we’re saying they meet  new criteria or didn’t meet criteria, and you can,   sort of, explain your thinking  around the diagnostic process. I think balance is really important  in the assessment process.   We need to really bear in mind that  some of the things that we ask about,   you know, might seem as part of general  development in the general population   and that we need to be aware that when we are  assessing different characteristics, we’re   thinking about a balance of what we know about the  general population and when this becomes, sort of,   you know, clinically significant. So, for example,  somebody who says, “Oh, I like routines and I’m   better in routines,” that wouldn’t necessarily  mean that they meet the diagnostic criteria for   the routines part of the diagnostic criteria.  Because when you look at the criteria for – around   routines, what it’s talking about in DSM  and ICD is that it’s not just a, kind of,   “I like routines, I’m better in routines.” We’re  looking at people having real difficulties with   very minor changes. So, there might be small  changes in daily life that actually cause quite   a lot of distress or are really difficult for that  person to manage and difficult for them to adjust. So, we always have to make sure that we’re really,  sort of, drilling down and understanding these   characteristics or behaviours and making sense  of what they really look like and how they might   be impacting that person. We also need to make  sure that we’re balancing this, because sometimes   these characteristics can be very subtle and  they – you might have, for example, somebody who,   on the surface – one of the things we ask about  is, you know, play and imagination. It might be   that someone looks like they’re doing lots of  creative and imaginative play on the surface,   but actually, when you really dig down and  understand more about it, it’s, kind of,   quite repetitive, it’s quite – there’s not  really variation there, not necessarily playing   in a way that other children might. Now, that  doesn’t necessarily mean it’s causing a problem   for that person, but it just might be that  it’s recognised as something that might be   not quite the same way that other children play. So, we’re always looking at this balance of  making sure we’re aware of, you know, what’s   part of just what we see a lot in the general  population, but also making sure we’re really   drilling down and tapping into some of the more  subtle behaviours. And that balance is a real   constant consideration here and that’s  why it’s so important to be working with   Multidisciplinary Team, to have  input from other professionals,   to make sure that we’re considering balanced  perspectives around the assessment process.  You may have heard of the ADOS. This is often  used as the direct observation assessment.   There’s nowhere that states that you  absolutely have to have a diagnosis in   order to get an – sorry, you have to have an ADOS  to have a diagnosis, but it’s very commonly used,   because it’s a standardised, validated  assessment tool. If it’s done well,   then it can be really useful. You – it never  – I mean, the ADOS doesn’t give you the answer   as to somebody – to say yes, someone’s autistic,  or no, they’re definitely not, but it does give   really, really useful information that can help  inform the diagnostic decision-making process. It’s got five different modules, which is  based on – you select the module based on   somebody’s age or expressive language level, or  both. So, you can use this with young children,   all the way through to adulthood, at any language  level, essentially. So, this is quite a useful   diagnostic tool and it’s one of the most common  direct observational assessments that’s, sort of,   been validated. But it, of course, only gives  you a snapshot of what’s happening at this   timepoint on this day with this ADOS assessor.  It doesn’t tell you anything about persistence   of characteristics, pervasiveness across contexts,  onset of characteristics, it doesn’t tell you any   of that. But what it does give you is a very  nuanced picture of – that’s based on a direct   observation, which can be really helpful when  it’s used alongside other information, as well. So, the developmental history, there’s  different developmental histories. There’s – one   example is the ADI-R, the Autism Diagnostic  Interview-Revised. You’ve also got things like   the DISCO, the 3Di, the DASI. There’s different  developmental histories, but essentially,   what the developmental history does  is to provide, again, a detailed   nuanced picture of development. And the idea is  that you get, sort of, descriptions of behaviour   from – and characteristics from the parent  or caregiver and that – and you ask about   the early developmental period and through the  lifetime, to help us understand more about whether   the characteristics we’re looking at have  been present since early childhood and what   they look like across the lifespan. So, this is a  really important part of the assessment process. We do always have to think about differential  diagnoses and co-occurring conditions. So,   we know that actually, it can be quite rare to  work with pure autism, so autism on its own,   without any co-occurring conditions or con –  or differences. So, it might be that you have   autism with another neurodevelopmental condition,  like ADHD or intellectual disability. It might   be – co-occur alongside anxiety and depression  or eating disorders. We know there’s lots of   high rates in terms of gender incongruence and  gender dysphoria. So, there’s lots of things   that we have to look at alongside autism  and that’s part of the assessment process,   and that can involve having to tease  things apart to make sense of them. We also have to consider cultural differences and  think about what we’re assessing in relation to   autism and whether they – some of those aspects  of the assessment might be impacted by cultural   considerations. So, for example, things like  the way in which eye contact might be used or   situations in which eye contact  might be used might be different.   So, the – some of those cultural considerations,  which can be really important, right from the   process of, you know, referral and who is  being referred and picked up for referral,   all the way through the assessment process. And,  also, to think about gender differences, as well,   in terms of thinking about,  potentially, subtle presentations,   the reasons why people might not  be presenting to services for an   assessment until a bit later in their life and  to unpick some of those considerations, as well. Now, usually, the person who puts their name to  the diagnosis will be – their core training will   involve training in differential diagnoses. And  so, very often, the person who will give – put   their name to the diagnosis and be responsible  for bringing all the information together and   weighing up differential diagnoses will either  be a Psychiatrist, a Clinical Psychologist or   a Paediatrician. Because part of that process  involves considering whether what we’re seeing,   in terms of the characteristics of that person,  whether they could be better explained by   something else, and that’s a really crucial part  of the assessment process. So, whoever puts their   name to the diagnosis has to have training  in those differential diagnoses, as well. We have lots – of course, lots of professionals  with a wealth of expertise in autism assessment   and also working and supporting autistic  individuals, often involved in the process,   as well. So, we’ll often have Speech and Language  Therapists, Occupational Therapists and nursing   staff or education specialists or  neurodevelopmental practitioners. So,   there’s lots of people who might be involved  in the assessment process and be doing specific   aspects of the assessment process, like the ADOS,  for example, like the developmental history.   So, you may have different people  involved in the assessment process   and it’s in – it’s really valuable to  have input from a Multidisciplinary Team. So, for example, if you’ve got someone with –  a child with significant language delay, it may   be really helpful to have Speech and Language  Therapist’s input in the assessment process to   understand more about the nuances of that and  how that might fit in with a picture of autism.   Same goes for somebody who’s got, sort of, really  significant sensory integration differences or   difficulties. It might be really helpful to have  an Occupational Therapist involved in that process   or have, you know – particularly if they’re  trained in sensory integration, because they’ll   have a, you know, a really in-depth insight  into that particular aspect of the presentation. So, really, when we’re  unpicking these complexities,   particularly in terms of differential diagnoses,  one of the core things to be thinking about is the   onset of symptoms, because if this is autism, you  would expect there to be qualitative differences,   at very least, in the early years of life. And  it may be that the difficulties don’t manifest   until demands exceed capacity, so you may not see  things causing problems until a little bit later,   or causing impairment until a bit later, but the  qualitative difference is if the – if this is   autism, you would expect to see in the early  years of life. Sometimes that requires quite   a nuanced exploration of the early years, with  lots of, kind of, detailed careful questioning,   but that’s one of the really key considerations  in relation to an autism assessment. We’re interested in the developmental trajectory  more generally, as well, so not just the onset,   but what happens throughout development,  because again, this is a really crucial   part of the assessment process. You’re looking at  pervasiveness across different contexts. So, you   know, we have to – do have to bear in mind that  some people may employ strategies that might mask   particular characteristics associated with autism,  and there’s quite a lot of work looking at,   sort of, the concept of masking and camouflaging.  Although it’s not necessarily an autism specific   concept, it is important to consider that when  we’re thinking about pervasiveness and the,   sort of, level and the nature and the significance  of the – of potential masking behaviours. And the clinical quality of symptoms.  So, you know, you might see particular   behaviours that on the surface level, sort of,  that describes, and one example might be, okay,   they use inappropriate questions or statements.  But what that doesn’t tell you very much about   is the clinical quality of that particular  characteristic. So, there’s lots of different   ways that people might say inappropriate questions  and statements. They might say, “Why has that   person got no hair? Oh, I’m sorry, I shouldn’t  have asked that. I shouldn’t – I’m really sorry,   I shouldn’t have said that [gasps],” you know, and  they’ve blurted it out in a very impulsive way.   They’ve not managed to, sort of, inhibit what  they were thinking and they’ve blurted it out,   and the moment it comes out of their mouth, they  realise “Oh [gasps], I shouldn’t have said that,   I’m really sorry” and they try to,  kind of, spontaneously socially repair. Now, that’s an example of one way that  someone might say a socially inappropriate   questions – question or statement. You might have  someone else who says the same thing, but in a   really different way. So, they might say, “Why has  that person got no hair? Why are you telling me to   keep my voice down? I’m just asking a question.”  So, they’re still asking and making a statement or   asking a question that’s, kind of – might  be considered socially inappropriate,   but the way in which they’re doing it is totally  different from the first example. And the second   one might be more indicative of someone who  has difficulties understanding social cues and   social rules, whereas the first one might be more  about, kind of, impulsivity and disinhibition. So – and again, you might have a third person  who’s saying it in a way that’s deliberately   intended to hurt someone or to provoke  a reaction, which is another different,   sort of, clinical quality. So, we’re not just  looking at the presence of these characteristics.   We’re looking at the clinical quality of those and  whether that fits with what we might expect to see   in the context of autism, and sometimes that can  be very complicated, depending on what you’re   having to unpick. So, in the assessment process,  these are all really important considerations   and it’s really helpful to have input from   a Multidisciplinary Team to be able  to make some of these decisions. So, finally, once this – once you’ve been  through this process in terms of looking at   different sources of information, thinking about  differential diagnoses, thinking about any other   considerations, and looking at the – whichever  diagnostic criteria is being used in the service,   once that process has happened, the idea  is that the professionals will have been   through the diagnostic criteria  and made a decision in terms of   a diagnostic outcome. So, whether you’re –  an autism diagnosis has been given or not.   And if you align your thinking with the  diagnostic criteria, it is much easier   to be able to talk through and rationalise  and explain your diagnostic decision-making,   and that’s why it’s so helpful to – can be so  helpful to align it with the diagnostic criteria. It’s also really important that we recognise  that there are many, many strengths associated   with neurodiversity and that when we are, sort  of, writing up reports and providing feedback,   that we really have a balance and we think about,  “Look, we – this person may be struggling in   particular areas and may need support in certain  areas.” And that might be because part – at least   in part because the society is structured by the  major – neuro majority for the neuro majority, but   that’s another talk in itself. So, we might be  identifying areas where people need support,   but also, it’s important to balance that out by  recognising that there are many, many strengths   associated with autism and neurodiversity, as  well. So, we consider a balance of those things,   both in the report and in the feedback, as well.  I mean – and, of course, that the recommendations   will think about specific needs for that  individual and what they may need at this point. So, that’s a bit of a overview of autism  assessment and diagnostic process,   some of the complexities and what is important in  unpicking autism during the process of assessment.