Emma Woodhouse Hi, I’m Emma Woodhouse.  I’m a Neurodevelopmental Specialist,   and I train professionals in the  assessment and diagnosis of autism,   and that’s what I’m going to talk to you  about today. So, assessment and diagnosis. Now, in relation to autism, there are lots of  conversations and debates about language and   terminology. So, for example, you might  have heard the term ‘neurodiversity’,   and neurodiversity is often used to  describe the concept that there is   natural variation and natural differences  in the way that our brains develop and in   the way that we perceive and understand  and make sense of, and interact with,   the world around us. And that includes the social  world as well. So, neurodiversity, sort of,   conceptualises that and also focuses on the many  strengths that you see in those differences. What I’m going to talk to you about  today is autism and how and when that   might be diagnosed. Now, in the assessment  of autism, we’re always looking at whether   particular characteristics cluster  together, how they cluster together,   and whether they – those characteristics  have been present since early childhood. So,   I’m going to talk about how we assess  that and when a diagnosis might be given. Now, I’m going to talk today about the medical  model and – because that’s primarily how autism   is assessed and diagnosed in the UK. Some people –  quite lots of people don’t like the medical model   because one of the things about the medical model  is that there’s – can be a focus on the, sort of,   difficulties and deficits, and one of the criteria  for giving a diagnosis of autism is that there is   some associated impairment. So, some people don’t  like the term ‘disorder’, some people prefer   ‘condition’, some people don’t like that either.  So, there’s lots of these debates happening around   these – the, sort of, labels, terminology and  language. What I will talk to you about today   is the way that di – autism is diagnosed in  relation to the diagnostic systems in the UK,   which are based on the medical model. And I’ll  talk a bit more about some of these terms as well. So, one of the first things to say is that  there are two different diagnostic systems   that are used worldwide, two main diagnostic  systems. One is called the DSM, which stands   for the Diagnostic and Statistical Manual of  Mental Disorders. And one is called the ICD,   which is the International Classification of  Diseases. Now, the DSM was developed by the   American Psychiatric Association, and the ICD  was developed by the World Health Organization. One of the things that can cause a bit  of confusion around labels and diagnostic   terms is that in the UK, some services use  the DSM and some services use the ICD. So,   there’s some slight differences. Now,  fundamentally, when you’re looking at   an autism assessment and diagnosis, people  are looking at the same sorts of things.   But there are some subtle differences  and some differences in the language,   in terms of diagnostic labels, so I’m  going to briefly mention that to you now. Under the DSM, now we are using the system  – the most up-to-date version of the DSM is   the DSM-5-TR, which is text revision. So, under  the DSM-5-TR, the diagnosis that is often given   is autism spectrum disorder, as an overall, sort  of, diagnostic term. If you look at the DSM-IV,   you will see a list of lots of different  diagnostic labels, including autistic disorder,   Asperger’s disorder, but there’s a  few others as well. Under the DSM,   those diagnostic labels are no longer used. So, if  services are using the DSM, which is the American   Psychiatric Association classification system,  they won’t be diagnosing Asperger’s disorder.   All of those – separate diagnoses have been  replaced by one overall diagnosis of autism. So, when people say, “Oh, I don’t know whether  Asperger’s exists anymore,” under the American   system, it doesn’t. Under the World Health  Organization system, which is the ICD,   there’s an extra complication because there  are two different systems in use at the moment   because the ICD is in the process of moving  from the tenth version to the 11th version. So,   this sometimes causes confusion. So, in the  UK at the moment, some services use DSM-5-TR,   some use ICD-10 and some use ICD-11. So, we have  three different diagnostic systems in the UK,   which can really cause confusion sometimes  for families, in terms of these labels. So, under ICD-10, which is still being used, you  have these – a list of different types of autism   diagnoses, and that will Asperger’s syndrome. So,  if a service is still using ICD-10, you may still   have that diagnosis being given. The newer version  of the ICD is very similar to the DSM-5-TR in that   they’ve got rid of all these separate diagnoses,  and they have one overall category for autism. So,   in a few years’ time, once everybody  has moved from D – ICD-10 to ICD-11,   you will just have this one diagnostic category  for autism, rather than different labels. This might sound a bit confusing, but  don’t worry because you don’t need to   know all of the different terms. It’s just  I wanted to explain this because there are   lots of different labels that people use and  sometimes it can be confusing. Essentially,   when professionals assess for autism, they are  all looking at the same sorts of characteristics,   whichever diagnostic system they’re using. So,  it doesn’t matter too much whether a service will   be using DSM-5-TR or ICD-10 or ICD-11, whatever  system is being used, people will still be looking   at these core characteristics and assessing  these core characteristics in relation to autism. So, one area that is always assessed when  we’re looking at autism is differences or   difficulties in social communication and social  interaction. So, that might include things like   use of facial expressions and understanding of  facial expressions. It might be to do with use of   language or language development. Looking at how  people use language in conversation – in to and   fro conversation, and also in terms of initiating  and using social speech. We’re always interested   in finding out about the way people play and how  they might use their imagination. How they might   look to share interests with other people and  share enjoyment. The use of eye gaze and how   that’s used in relation to interacting with  people. And also, kind of, other non-verbal   communication like gestures as well. And we’re  interested in finding out about the way someone   understands their own emotions and other people’s  emotions, and about friendships and relationships   with other people. So, whatever system is being  used, we are always interested in understanding   more about the way the young person will be using  social communication and social interaction,   and so we ask about that in quite a lot of detail. As part of the assessment, we’re also interested   in something that’s often called restrictive and  repetitive behaviours and interests or activities.   And this term – again, this is under the, sort  of, medical model of where it’s described,   but basically it includes things like routines,  if routines are very important to people,   if people really struggle with very small changes  to routines. Also, things like rituals or,   sort of, passions or very intense interests,  preoccupations. Many autistic individuals will   have real differences in terms of sensory  processing. So, that might involve sensory   seeking behaviours, or sensory avoidance, or  a combination of those things. And we’re also   interested in asking about, sort of, repetitive  actions or repetitive play or repetitive speech.   So, we’re always thinking about these sorts  of characteristics in relation to autism. In the medical model, we look at whether these  characteristics are present, whether they are   different from what we know about the way that  most people might be developing. So, that’s based   on what we understand about development more  generally. So, we’re looking at all of these   things in relation to that. Whether those things  have been present from an early age because autism   is what’s often known as a neurodevelopmental  condition, it’s about the way our brain develops.   So, we’re interested in knowing whether that’s  been present from early childhood, which you would   expect there to be differences in early childhood  if there’s an underlying autism diagnosis. And   the medical model – and there’s a question of  whether these cause impairment for the person,   and that’s part of the diagnostic criteria. And  that might be difficulties in managing, sort of,   day-to-day life, it might be difficulties in  association with things like sensory processing,   or real difficulties managing small changes, or it  might be difficulties in peer relationships. So,   that’s one of the things that we’ll  look at, in terms of assessment. We also have to make sure that we  think about other factors as well. So,   if you think about something like anxiety, or  another condition, like, something like ADHD,   it might be that people are experiencing differ  – difficulties or differences in some of these   areas for other reasons. So, we always have to  think about whether there might be something   else that could explain what the person is  experiencing and just, like – and really,   really unpick that and think about  whether this might be more about autism,   or something else, or autism  and something else together. So,   that’s part of the assessment process and it’s a  really important thing for Clinicians to explore. Now, one thing that can make autism quite  complicated to assess sometimes is that there’s   not a single symptom that’s exclusive to autism.  So, that means there’s not a single symptom on its   own where we can see that and say right, we’ve  seen that, it must be autism. And also, there’s   not a single symptom on its own that can rule  out autism. So, we can’t see one specific thing   and say, right, that person has done that, they  can’t be autistic, or they can’t have autism. So,   that’s why we’re always looking at the way  in which characteristics cluster together. The other complication is that many – or  everything that we assess in relation to autism,   you can see those, kind of, differences and  difficulties as part of the general population,   and as part of mental health difficulties, and  as part of other neurodevelopmental difficulties,   which include things like ADHD  or intellectual disability. So,   we’re always having to think about  the specific details and then step   back and think about the big picture  as well that’s part of the assessment. Now, an autism assessment involves difference  aspects of – there’s different aspects to the   assessment. So, one part of that will be a parent  interview, where we ask about early development,   and that’s really important in understanding  whether the characteristics are present from   early in their life, or if they’ve  started later on and that might mean   that it’s explained by something else.  So, it’s a really important part of the   assessment process will be interviewing parents  or family members about their early development. We also want to do a direct observation  assessment, so we will work directly with   the young person to make sense and understand more  about what we’re seeing when we’re with them. We   might get additional information, so for example,  getting additional information from schools,   through questionnaires or through an  observation, and to understand how that   person experiences different contexts.  And also, thinking about whether there   are other considerations that we need to  weigh up as part of the assessment process.  So, you would never ever make a diagnosis based  on one specific piece of information. It’s always   about getting different parts of information and  then bringing them altogether and thinking about   those in relation to whichever diagnostic  criteria is being used, either DSM or ICD. This is one example of a diag –  direct observational assessment. So,   you may have heard of the ADOS, the  Autism Diagnostic Observation Schedule,   and this is often used as a way to look at direct  observations. So, depending on the child’s –   your young person’s age or developmental level,  there’s different modules that you can choose and   there’s different activities, and if the person  uses language there’s questions as well. So,   it can be a really helpful way to look at, you  know, very specific aspects of the way that the   young person interacts. It only ever gives you a  snapshot though of what’s happening on that day,   in that moment, with that person. So, it’s very  useful, but it’s always intended to be used   alongside other information. So, information, for  example, from the parent and information from the   school. So, it’s one part of the assessment  that’s used alongside other information. The developmental history I mentioned, which is  usually with a parent or caregiver, or another   family member, there’s different developmental  histories that you can use. So, sometimes you   may – this is one of them, the Autism Diagnostic  Interview Revise, the ADIR, there are others as   well. Sometimes people use something called  the DISCO, or the 3Di, or the DAISY. There’s   different developmental histories, but what they  all do is focus on the early years and look at   the development to help us unpick what might be  related to autism and what might be explained by   something else. So, that’s a really important  part of the assessment as well. So, if you’re   a parent or caregiver who’s been asked to do  developmental history, the Clinician will probably   ask you quite specific questions about when your  child was younger and go through that in detail. We then have to think about what else is  happening. We know that lots of young people   who are autistic or have autism have additional  complexities, or different challenges, including   things like mental health difficulties.  So, thing – we know that, for example,   rates of anxiety tend to be higher in autism,  compared with the general population. So, we have   to make sure that we think about those things as  well. And also, be aware that we think about other   neurodevelopmental conditions, so for example,  ADHD, and it’s not unusual to see autism and   ADHD occurring together. So, it’s important that  we think about that both as a kind of potential   additional diagnosis, or to make sure we’re  not getting them confused and mixing them up. We also have to make sure we think about con –  cultural considerations and be aware that the   way that we assess autism might be influenced by  certain cultural differences. So, for example,   the way that people use eye contact might  be different in different cultural contexts,   so we have to think about those things. And also,  to be aware of potential gender differences in   presentation of autism as well. And being aware  that some individuals, their – the characteristics   of autism might present more subtly, so we have  to make sure that we’re aware of that as well. In terms of who does an assessment, part of  the process always has to involve weighing   up whether what we’re seeing could be  better explained by something else. So,   if you hear people talking about differential  diagnoses, that means that we’re thinking about,   well, we’re seeing this particular set of  characteristics, we need to make sure that   this is best explained by autism and that  we’ve thought about other explanations. So,   we’ve thought about things like mental health  conditions, neurodevelopmental conditions,   and we’ve considered that and weighed  that up as part of the process. Usually, the people who are trained to do  what we call those differential diagnoses,   that’s usually a Psychiatrist, a Clinical  Psychologist or a Paediatrician because part   of their core training involves learning about  lots of different conditions and presentations   and weighing those things up. So, usually,  your assessment will involve – at some point,   will involve a Psychiatrist, a Clinical  Psychologist or a Paediatrician. We also   have – we have lots of people involved in autism  assessment, with lots of sets of expertise and   professional training. So, it’s very common for  Speech and Language Therapists to be involved   in the assessment as well, Occupational  Therapists, Nurses, Neurodevelopmental   Practitioners who might be specifically trained  in autism assessments. So, it might be that you   have these professionals involved in different  aspects of the assessment, and then, sort of,   bring all that information together to  think about the diagnos – the diagnosis. After this process and once we’ve  got the information from the parent,   in terms of developmental history, or  the caregiver, we might have information   from other places like school, we’ve  done direct observational assessment,   we then think about those other potential  considerations and have a discussion,   think about the diagnostic criteria, and make  a decision about the diagnostic outcome. So,   that means whether a diagnosis of autism will  be given or not. And then it’s really important   that – as professionals, that we explain that and  our reasons and how we came to that conclusion. Now, it’s really important to remember that  there are lots and lots of strengths associated   with autism and with, sort of, neurodiversity in  general. So, when we’re thinking about writing the   report and thinking about the young person we’re  working with, it’s really, really important that   we think about those – all the many strengths  that might be – that that individual may have,   as well as thinking about where they might  need some support and where they might need   some help. So, the – we need to make sure  we have a balance of the strengths and also   where they might need more support, either  at school or at home or wherever they may be. We’ll also – there’s also a report, which  will ex – sort of, explain the diagnostic   outcome and how that conclusion was  reached, and some recommendations   about what might be helpful. And, of course,  those recommendations may change over time,   they might have particular recommendations  at some point, but based on their, sort of,   current strengths and support needs,  there’ll be some recommendations. So, that’s the assessment process in a  nutshell and some of the considerations   that we think about when we’re making  the diagnostic assessment for autism.