Neurodevelopmental assessment, the basics – Dr. Max Davie

Matt Kempen
Marketing Manager for ACAMH

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Dr. Max Davie, Community Paediatrician specialising in child development, gives a talk as part of the ACAMH educational series of talks on neurodevelopmental assessment.

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Dr. Max Davie

Dr. Max Davie

Dr. Max Davie is a consultant community paediatrician, working in Lambeth as part of Evelina London Community services. He has a special clinical interest in the assessment and diagnosis of neurodevelopmental conditions in school-age children. He is Officer for Health Improvement at the RCPCH, and trustee and founder of the charity ADHD UK.

Transcript

My name is Max Davie. I’m a community paediatrician, working mainly in developmental paediatrics near the ACAMH offices here in Lambeth and I’m doing the talk for ACAMH today about neurodevelopmental assessment. I’m really just going to cover the basics because, well, frankly this is my entire job. So I can’t think of everything I do in an hour, but I will do my best. This is the second of two talks that I’ve recorded this morning, the first being on child development and giving you the foundations of child development and how it actually happens and I think it’s probably helpful if you don’t have a grounding in child development to go back and look at that one first, but nonetheless, let’s start.

What I’m going to do in the next hour or so is to talk about the purpose and scope of neurodevelopmental assessment. Why we do it, and then its structure.  How it’s structured, what the information is and how we put it together and also what its relationship is to diagnosis. I want to put a flag in immediately that this is not necessarily going to teach you how to make diagnoses. It would be ridiculous in an hour, but then I will take you through a sort of scheme of history taking, observation, information gathering and some thoughts about formal tools. A lot of this is obviously going to be based on science and evidence.

But I also a lot of it is to do with my own experience. I’ve run a developmental service, particularly for over five children in Lambeth for over ten years, and I’ve just worked out what works for me, but also for my team. So I think I could probably give you some practical and experience based tips on how best to do neurodevelopmental assessment in a way that is accurate, free of bias and as efficient as possible.

So what is a neurodevelopmental assessment?

Well, to an extent, it’s two things. One is it’s a clinical assessment. So we see it as an assessment where you sit down with a doctor, in our service it would be all doctors, but actually anyone could do a developmental assessment in a slightly different way, but also the assessment, that single assessment is part of an overall pathway which is aimed at defining the developmental profile of the child. So it may be that you will do a developmental assessment and then someone else will see them and then you’ll put your information together and then you’ll get a picture, because what we’re looking at is a profile.

We’re looking at what the strengths and difficulties of the child from a developmental point of view are, but not in isolation. It needs to be placed in a psychosocial context. So, for instance, a child who comes from a family where there’s a lot of vulnerability or poverty, domestic violence, where there’s difficulties with themselves, the family with mental health difficulties, that is important partly in explaining some of the developmental profile, but also more importantly in refining and directing the support that this child and family are going to need.

Because ultimately and I’ll come back to this at the end, the point of an assessment is to help. So it’s not to satisfy our intellectual curiosity. So in order to get that psychosocial context you need to be holistic in the sense of understanding all aspects of the child, but you also need to be holistic in the sense that you must ask about, at least to an extent, all the different aspects of the child’s development. So the child’s communication, the child’s behaviour, because they’re all interlinked and their motor skills all related to each other.

If you just do an assessment for a particular condition or a particular aspect you will miss these interrelationships and you’re likely to either over or under-diagnose. So I would say just briefly that an assessment of this kind may lead to a diagnosis, but that’s not the purpose of the assessment. And finally, as a physical, someone with a physical health background, I want to emphasise that it is important to have some attention paid to the child’s physical health as part of their developmental assessment.

However, you want to define that? I think it is vital to have at least some thought about it. So what are the aspects that we’re looking at? We’re looking at cognition often not directly in terms of questioning, but maybe in terms of finding out what the academic levels of the child are from school, but also from some direct assessment. I’ll talk about later. We talk a lot about language and communication. That would be something that we’ll talk about in a minute.

We’ll also have a look at the child’s social interaction. It’s very important, particularly if you have older children to think about behavioural inhibition and motor and self-care skills are also a vital part, interrelated to everything else as well. Also and finally, this is something you might not find in textbooks, but I have a section of my assessment where I talk about the child’s flexibility, their anxiety and their sensory needs because those seem to group together and be difficulties for the same group of children.

Now, if you’ve seen my other lecture, or talk rather, I have a different set of subheadings because that’s for understanding the process of behaviour. This is for what you ask about in clinic. So there are two lists for two different purposes. So why are we doing this? Why do we bother with assessing their development? We have to remember that the child and family will come with certain difficulties. They don’t come with I think I might have ADHD. They come with my child can’t behave in school or my child, you know, loses their temper all the time and throwing stuff around.

That’s the thing that they come with and we must never forget the thing they come with because that’s the thing they need help with. So putting them in a developmental context can help to understand the behaviours but this is important almost never does a developmental assessment directly explain a behaviour. It will always be in the context of a child who has ADHD, for instance, might, you know, throw things around, but the ADHD still doesn’t explain why they throw things around, except in the context of also being angry and frustrated and isolated and feeling like they have no other way of expressing themselves. Then the ADHD kicks in and then they throw stuff.

So understanding the child’s development, particularly when it’s put in context allows people to understand the child, and if you understand somebody you can treat them in a more positive way, and that is one of the really key elements of assessment is to get people to really see the child as somebody with needs and to see their context and understand why it is that they behave the way that they do, but ultimately, it’s about refining support. The evidence is that if you make a diagnosis or, you know, you do this brilliant assessment, but the support doesn’t go in place it doesn’t actually help.

So, for instance, if you’re trying to reduce exclusions from school, it’s actually not the diagnosis that helps. It’s the support put in place in the community, by which I mean schools, families, youth services, the police, wherever there needs to be an understanding of these people and support, otherwise we’re wasting our time. So actually, if you’re running or you’re involved in neurodevelopmental assessment very quickly you see that actually we have a responsibility to ensure support in the community and to advocate for support in the community, and that becomes very, very important, I think, as a broader responsibility.

But yes, of course, if you do make a diagnosis, you may have some diagnosis driven management using government guidelines you have and you may do so, but I want to emphasise that that is something that’s down the line. A lot of the stuff higher up in the list is actually more important, particularly in the short term.

Anyone could get a neurodevelopmental assessment, but we live and work in a system where there is limited resources and even systems with more resources some people don’t have the resources to access assessment, and I think it’s important that we don’t necessarily have to assess everybody, it probably isn’t helpful. The sorts of symptoms we’re looking for, the sorts of difficulties we’re looking for I would say are three things you need to look at. One is that they’re pervasive.

So pervasive means that they exist across different settings. If you have a child who’s perfectly behaved at school but very badly behaved at home that is not a pervasive difficulty. Now, it may be that they have a developmental problem that manifests itself in different ways, in the different settings that is pervasive. So it’s the fact that their difficulties are pervasive and that they are somehow related across the two settings. So it can be nuanced, but broadly speaking if there’s only a problem in one place that’s probably not neurodevelopmental. They need to be long standing.

Now, the kind of criteria for different conditions, tying themselves up a little bit and not about when it has to start at seven, it has to start 12. I’m not sure that’s something that is a terribly important debate. The important thing is does this look like something that’s always kind of been there?

Has this child always kind of been a bit like this, even if it didn’t cause problems early in life? Have they always been a little bit like this and now it’s causing problems? That’s the sort of question you need to think about when you’re assessing somebody as to whether this might be a developmental problem rather than a problem that’s emerged over time as a result of emerging mental health problems or environmental trigger, and of course, it needs to be functionally impairing.

You can have the most-lively or the most quirky or the most anything child, a child with, you know, whatever difficulties but it’s not actually making a difference to their life. We’re only satisfying our own curiosity and our own academic kind of egos if we are endlessly assessing them. It needs to be something that’s actually affecting the child’s life, otherwise we’re wasting our time. So when I go through this, those of you who work in CAMHs or had placements in CAMHs will think oh actually this is quite a lot like a CAMHs assessment, and I completely agree.

They are broadly, structurally similar and actually in a lot of the psychosocial aspects very similar indeed. Probably a little bit less in-depth than a CAMHs assessment, partly because what I’m presenting is not a gold standard tertiary centre. You know, extremely expensive assessment is something that I do on my own in an hour and a quarter, but there is different content and emphasis for a developmental assessment. So if you know CAMHs’ assessments well you’d probably very easily slot into doing developmental assessments quite quickly just by tweaking a few of the things you’re actually asking about.

So you’re in a very good position. So what is the structure? So there’s two ways of thinking the structure. One is as what you do in what order, but also the informational structure. What it’s trying to do is get to a point of getting a kind of objective view of what the child’s developmental profile is, and by doing that you need to triangulate several different points of view. Each point of view is subjective. So to get to the truth you need to kind of look at this from different angles in a sense, and this is why I’ve put up an image of surveyors triangulating, because what you need to do if you’re mapping somewhere is look at it from different angles and look at the differences between the different points of view.

So the history from parents is absolutely vital, but is their own point of view, and that’s not to say the parents are lying or manipulating. It is their story and they’re telling it and that’s fine. Your own direct assessment is also your own story, your own observation.

You have your own biases and also the child may not be displaying behaviours because they’re in front of a doctor or a nurse or a psychologist and they’ll behave very differently there, and also you’ll be doing some assessment, which I can talk about. And the third thing is information gathering. It’s absolutely vital that people who see this child every day, mainly thinking over five, teachers but in under-fives you have nursery workers, their point of view is really vital because they’re both professional.

They see a lot of children and their objective but also they know the child very well. It’s absolutely vital that we have their point of view involved in the assessment. So this is our clinic. Now, our clinic is for five plus. There’s not much difference if you were doing an under five in how you assess. You may use different instruments, you may set them different tasks, but broadly the big difference is the order. So we will have a parent and child present, although there will be opportunities to talk individually if that’s necessary. Obviously with an under five you’ll have the parents and child present throughout because the child wouldn’t necessarily want to be parted. I would have an initial chat and that’s very important, but the child at the heart of the assessment and make them feel important because it can be quite daunting, really.

Then I tend to do the direct assessment at the beginning. So then I have an idea of what the child’s capabilities are and then when I do the assessment, when I take the history, I’m like, well, okay, he’s not doing this thing that we would expect for a nine year old, but then I’ve just assessed him as having cognitive skills of a six year old, so I adjust my expectations. While we’re doing the direct assessment the parent will fill in a form. A form is a very good and non-invasive way if they’re marking if there’s any difficulties, mental health difficulties or their own history in a way that isn’t exposing and doesn’t require them to talk about sensitive things that they’re not comfortable talking about.

Then I will take a fairly long history guided by what I have already or have a referral form. I will have the initial chat with the child and then my assessment and then guide that through taking a history from the family. Keeping the child in the room because actually one of the things I’m really interested in is what children, how children react to being talked about, how they react to being a bit bored.

There’s not much to do in my clinic room, deliberately and basically how they respond to this situation I think is a very fascinating bit of data. So you might as well gather it. We usually do a physical examination of some kind, and I’ll talk about why that’s important and what you can do about that, and then we’ll feedback and make a plan. The point is not giving a diagnosis, almost never giving a diagnosis the first part after that initial assessment. I put this image up because actually in a way what you’re looking for is patterns.

You’re looking for bits of information, but then what are the patterns that join them? So obviously you will also triangle in that image, but there isn’t a triangle in that image. There’s just three pack men [s.l. 14:48] and it’s almost a similar thing you’re trying to do cognitively. You’re trying to work out all this kind of bits of information and see what’s in between. What is the big picture here? What is the type of brain? So I’ll come back to that later, this idea of what type of brain is in front of you, and I’m not sort of taking a sort of biological, hard core biological kind of stance on that. But what is the cognitive style, strengths and difficulties of this person in front of you and how can we help them with that? That’s the question that’s in front of us.

So what about diagnosis? I’ve downgraded it, but I still use it. I think, I would argue it’s still valuable, but I would argue that you need to do that holistic overall assessment first and then build a diagnostic assessment upon that. If you do a diagnostic assessment and you haven’t done a holistic assessment you will get your diagnosis wrong. You will miss out on opportunities to support the child more broadly and often, of course, diagnosis does require a specific assessment or specific questionnaires. Often that’s local practice, but actually if you look at the diagnostic criteria and you look at the guidance from NICE in the UK, for instance, There’s nothing absolutely specific that needs to be done, but the point is that there needs to be some investigation of the specific symptoms and specific criteria for those conditions, and absolutely a lot of these assessment tools do that very efficiently.

But you need to be careful. You need to be careful that we are not trying to make ourselves feel clever by making diagnoses. We’re not trying to feed some kind of perverse incentives so the child might get extra support if they get a diagnosis or the family might feel exonerated and not responsible for the child’s behaviour if they get a diagnosis, and equally there may be reasons not to give a diagnosis which are not valid.

So you’ve got a real investment in having a particular view of things and you don’t want to make a diagnosis, but actually if they have it they have it. So there’s lots of bias going on potentially and we’ve just got to be very aware that we as professionals are exactly as prone to cognitive bias as the general public. There’s very good evidence for that. We are humans like everyone else, like the people in front of us. So we just need to check our cognitive bias and build systems around ourselves that reduce our tendency to cognitive bias, which I think is why we have these standardised things and why I think it’s important to have a broad look before we narrow it down.

So that all said, what do you have to ask about when you’re asking? I tend to star, I’m going to put the chats with the child later on because I think I want to structure it for you so that you understand, kind of, the logic of it.

So we start with the background. Where does this child come from? I ask about the parent’s history. I ask them to fill in a form about it and I’m very interested in that because I think that not only is it where the parent was born, work in London, lots of our parents are born elsewhere and have a history of migration which is important, but also the parent’s own history of employment. What the parent did in school? How they got on, because that not only is genetically important, if someone’s got learning difficulties, then their child may have, but also the attitude of the parent to the education system is really important in conditioning how they respond when the child starts running into problems or whether, you know, younger children their willingness to send them to nursery.

So I think that is really, really important. Over and above that there’s a broader genetic question about, well, where does the child come from? So a lot of the families we work with, one or more of the biological parents is not with the child. So actually it’s the parents’ history… the history of the people who are looking after the child is important, but so is the history of the people who are biologically related to the child, but that’s different.

So often I don’t pry into an absent father, but I would just say, well okay, we just need to know about this person from a genetic point of view. Do they have a history in their family of X and Y? I don’t really need to pry into personal things. I just need to know, what’s the genetics here? So that makes things a bit easier. You need to think about the current household, and by that I mean who lives with the child. It may be aunties, it may be grannies. It may be mum’s boyfriend. It doesn’t matter. It’s form a history. Form a picture of who’s there and how they support the child? Of course, we need to talk about vulnerabilities both past and present. So when you’re thinking about the parents history, if there’s been a history of domestic violence, that’s not unimportant, because if that’s happened at the time of a crucial time in the child’s development then that will have had an impact.

So sensitively asking about that can be really, really helpful, and I’ll think about that a later. It’s also important to celebrate the strengths. If you have a mother who’s grown up, you know, as a young mother who’s been a victim of domestic violence, had mental health problems and had this child who is very difficult, they can feel very blamed and I think it’s really important, and when we’re assessing children to almost say, well, wow haven’t you done well and you’ve got this brilliant, kind of, broader support network. You’ve got him into school. He’s got this school that’s really helping him, and you’re doing this and you’re doing that. So thinking about the family’s strengths as well as their vulnerabilities is really important when you’re thinking about the background.

Then let’s move on to the child themselves. Thinking about pregnancy is very important. I’ve covered the different things that can affect the child in pregnancy in my previous lecture, but broadly, did it go well, and it’s important to find out a little bit about whether there were any drugs or alcohol consumed. If you can do that in a sensitive way. Birth is important in terms of any trauma, but then just medical history generally, both in terms of whether there may have been a direct effect, but also children who are unwell just don’t get the developmental input that other children would get. I’ve put in immunisations here not because it’s particularly relevant, but it’s always worth if you’re seeing a child to check whether they’ve got their immunisations, so they don’t get measles or something else horrible, and you can have a chat about them. So I apologise. That’s maybe a little bit indulgent of me as a paediatrician, but it’s really important.

But what is important is we mustn’t miss children who have hearing and vision deficits. A child may be behaving terribly badly in a classroom and nobody has realised that they are deaf and maybe lots of reasons why they’re behaving badly, but we must pick up hearing deficits or vision deficits. It’s very easy to pick up. Screening is widely available and there’s just no excuse for not at least thinking about it. So then we take a developmental history.

Now, these can be very daunting because you have milestones? When did the child do this? When did the child do that? Did they do two words at three or four words at five? How many steps did they, how many feet were they using up and down stairs, and none of that really matters, honestly, particularly if you’re looking at slightly older children. The point is to go through the child and what were they like at different ages and have a little bit of an idea of what progress they were making, but the main thing is what their personality was like and how they behaved. So as babies, what kind of temperament were they? Were they easy or difficult? Early, difficult and that’s actually that is a scientific phrase, although it’s also used as a later, but difficult temperaments are associated with later neurodevelopmental problems. So it’s important to know and that will often be shown by difficulty with feeding and sleeping, which, after all, are the main functions of a baby.

As a toddler, you have to think about play. Did they play socially? Did they play mechanically? What were they interested in? Did they like dressing up, play, you know, pretend and if they did like pretend were other people allowed to pretend with them? That’s often a really interesting one. Then moving a little bit more into the milestones end of things, you know, were they speaking? When did they start talking?

Most parents can remember roughly when they started talking and when they started walking. Beyond that it’s much more useful to say, well, okay when they got to playschool when was that? Oh, three. Okay, what were they doing at that point? When they got to playschool do you remember how much they were talking? You know, they were talking loads. They were kind of telling me all about it or no, they still had only one word.

That’s the sort of thing that people remember, but within that, when they start to move out of the family into the wider world, it’s really important to ask about their sociability. Did they make friends? Were they interested? Did they want to play with other children or were they sort of off in the corner playing with the water table? Then you go off to pre-school and then you develop that sort of history? Are they sharing? Are they aggressive?

Do they have friends? Again, friendship starts to develop about three and become very important. So are they able to negotiate these social relationships, which are very different to family relationships and much more conditional on the child’s behaviour. Then, you know, you start to get early indicators of hyperactivity and the classic question, of course, is when the children all sit down to have circle time in the pre-school is he the one who is not sitting down or won’t sit down?

So that’s a really important, you know, aspect, but of course parents may not have been told. So a lot, increasingly as a child spends more and more time away from the family and in pre-school or primary school then it becomes much more about what the school say to the parents than necessarily what’s happening at home, because the thing about schools is they have 30 children of the same age, and if this child stands out that’s a really interesting indicator. Families often will, kind of, mould themselves and adapt themselves to the child in a way that’s really appropriate and really great, but not helpful for you when you’re trying to find out whether the child’s got a neurodevelopmental problem because they don’t appear often to have any kind of functional difficulties.

The classic example is a child who the parent insists perfectly understandable language and is perfectly able to express themselves, and yet when you assess them have language skills on the point one centre and you think, well, is the parent pulling my leg. No, they have just adapted their communication style to the child and their expectations to the child who after all they have spent all their lives with. So you almost can’t see the wood for the trees after a while because you have adapted so profoundly. If you wanted, so if you have a child and you think, oh, I just want to find out if there’s any neurodevelopmental going on here, or you’ve got a child who’s been referred and the family aren’t really sure that they have any problems.

This is a really super quick screen that I use almost all the time, particularly when I know I have to dig into one area and I’m seeing if I need to spend my time digging into other areas because none of us have got infinite time to go through all of these things infinitely. So, just a normal day, a normal Monday going through that is a really useful super quick screen. So what’s it like getting ready for school, dressing, remembering to brush your teeth? What’s it like physically getting them to school? So do they drive? Are they on the bus, are they walking on the road, leaping about and leaping in front? You know, what are their road safety like? How does that process go, and then imagine that they pick them up, and then incidentally I often ask, you know, have they forgotten all of their coats and hats and their bag?

Do they need to go back or lot? So, again, it’s about sort of attention, and what’s it like going to the supermarket? At some point we’ll have to kind of produce a rating scale of the parents’ facial expression when you mention going to the supermarket, because I think that aghast expression or they’re just shaking your head and saying I just don’t do it, is a reasonable indicator that the child has some kind of behavioural difficulty or possibly neurodevelopmental difficulty.

So what happens in the supermarket is also very important. Do they run off? How is the queuing and generally can they cope? Do they get really agitated, and then meal times also very important. What happens, is the child chatting? Does the child sit still? Is the child is able to use cutlery? So all of these things bring together is very mundane question. All of these developmental skills come together and then of course there’s bedtime. Bedtime is very difficult for children with neurodevelopmental problems for lots of reasons, and there’s large amounts of sleep difficulty in these children, but unpacking that can be quite helpful. So is it that the child just won’t go to sleep, refuses to go to sleep and is angry, in which case you think about, well, are they scared? Are there sort of difficulties with sort with their attachment style, meaning that they have to be kind of in with everyone else? Or alternatively, is it just that they simply can’t switch their brain off, as is often the case in neurodevelopmental conditions?

So also unpacking how the family manage that bedtime, it can be really fascinating. So I say it’s a super quick screen. Sometimes it can take you quite a long time to get through this, but it tells you where you need to dig because you haven’t got time almost unless you’re working in one of these flash tertiary centres to dig everywhere. So then we talk about accountability. So again, as I’ve said, dig into this if you think it’s a problem, if the evidence you’ve got so far tells you that this is probably a problem, if the school think it’s a problem or the nursery, but first of all understanding, this is both understanding of language, and again, I wouldn’t worry too much about milestones. Does he understand three key words or four key words because people don’t remember that? It’s can he understand you and obviously understand you? Do you have to adapt yourself to make your sentences shorter? Do you have to make things very clear to them? Do you have to repeat yourself, and often families will go, yes, but he doesn’t listen and you have to go, no, I’m not asking whether he does what he’s told.

What I’m asking is does he understand what you’re saying, and you have to really clarify that, and the second thing you have to clarify is, okay, you might understand formal language, but particularly if you have autistic spectrum problems you may find informal language difficult. So jokes, any kind of ambiguity or idioms, so wrong end of the stick is a nice phrase to use because they’re both an idiom and also they are getting the wrong end of the stick just to kind of see what it is that they do and don’t understand about language.

Then, of course there’s expression. So it’s whether they express themselves clearly? It’s very difficult to get parents to give you a history of how many sentences and how many, you know, whether they’re able to use the past tense effectively, but it’ll give you an idea whether they can express themselves properly and often the most useful things to ask about is whether they’re able to explain things. Again, something that’s difficult in the autistic spectrum, because people on the autistic spectrum often find it difficult to know what it is the other person doesn’t know or being asked to describe things, describe an event which is distant from the actual conversations going on, but also not only is it what they’re saying, but how they’re saying it. Is it animated? Is it associated with a kind of monotone speech or is it kind of lots of different modulation and also is it repetitive? Are they talking about the same things over and over again, and this brings me onto conversation. Conversation in a way, the ability to conduct a conversation for me is the most important differentiator between somebody with a language disorder and somebody with an autistic spectrum disorder.

Someone with a language disorder may struggle to express themselves, but the basic elements of conversation that is listening to what somebody else has to say and building on it, saying something yourself, and then they build on it and then it goes on like that. That is intact in language disorder. It’s just that what’s said is often quite basic and needs to be quite basic. In autistic spectrum disorder it’s that basic ability to understand what the other person is intending in the conversation and build on that accordingly?

That is a very, very central difficulty. So I talk a lot about what conversation is like. Does it feel like the person is interested in conversation? Does it feel like the other person wants an audience or a conversational partner? So often, particularly the more able and verbal kids on the spectrum will, kind of, hold forth and not really understand when people have stopped being interested about whatever interest it is that they have, and all of this is underpinned by non-verbal communication.

So the presence or absence…Sorry, the use of eye contact is not really present or absence of eye contact. It’s whether the child is using eye contact as a tool to make or break social contact. Whether they’re using gesture, and one of the things I like to ask about is whether you can tell how they’re feeling from their facial expression. I think that’s really a useful question and also whether they can tell how other people are feeling from their facial expression.

So then we move on to social abilities.  I tend to ask about these in different kind of arenas, but essentially what we’re asking about is whether the child is able to form relationships, whether they have social interest in other people. So sometimes if you think about wider family, it’s interesting to ask, well do they ask after people? If they haven’t seen their uncle for a while do they ask after them? So it’s whether they see their relationships as important in themselves or if they are means to an end? So just to go through quickly, what’s their relationship with siblings is very important.

So one of the things I love doing is asking the children how annoying out of ten their siblings are. That’s partly just to see if they find it funny, because that’s interesting to me but also if they score them very highly and the record is a million out of ten, what is it that annoys them about their sibling, but more importantly what is it about them that annoys their sibling and often children with poor social understanding get completely flummoxed by this question?

So sibling relationships are very important, partly because of the annoyance or mutual annoyance which, of course is a normal part of sibling relationships, but also what happens when the other child is hurt? What empathy is displayed? Now, it’s really important but it’s absolutely fine, it’s absolutely possible for a child to be highly empathic, but not know how to show it. So it doesn’t mean the child doesn’t have empathy, it’s that they’re not able to display it and communicate it and that’s an important distinction.

With parents this can be quite an awkward conversation, but it’s actually knowing what the child’s relationship with the parent is. How affectionate are they? Whether they talk to the parents about problems, when they come to them for comfort is really important for how they see the parent.

Now, obviously, this isn’t just about the child’s developmental status. If there’s problems with the relationship that will colour it, but you’ll know from other things that the parent has said whether that’s the case. Friendships are obviously very important because non-negotiable. Sorry, a negotiable relationship which can be broken and formed quite fluidly and is conditioned by unwritten rules of friendship. So if somebody has not understood those unwritten rules that can be very difficult, but it’s important to note that lots of children with developmental problems have problems with friendships and language problems will make your friendships more tricky, particularly as you get older and in particular if you’re trying to form new friendships.

But ADHD difficulties, behavioural inhibition difficulties make friendships more difficult. Classically, the child will be very charming and make friends quite easily, but lose them because they partly get into trouble a lot and children don’t necessarily like that, but also they’re quite full-on and people tend to drift away. And finally, it’s important to think about how the child exists within group settings.

Obviously, the classroom is the classic one and you will have some data about that, but if a child has got learning difficulties but is otherwise doing quite well developmentally, very often you get the pattern where the classroom is not good, but actually when they go to jujutsu or when they go to have a family party or when they go to church or mosque, they’re perfectly fine because they’re not being academically stretched. So that can be quite interesting. Conversely, of course, if the child is absolutely no good, not coping at all in a group setting, particularly if it’s not on their agenda, then that is an indicator that there might be some social difficulties. Again, not specific to any particular diagnosis, but important nonetheless in knowing, okay, this is an area where the child needs, we need to do some work.

So when I say behavioural inhibition, I’m effectively talking about indicators of ADHD and actually this is one of the only areas where there’s such a close melding between a particular developmental skill. It is a skill, the ability to inhibit your own behaviours, to inhibit your own impulses, but also to control your brain. The way I think about ADHD is a sort of hungry brain that constantly needs stimulation, and it’s the ability to control that that is lacking in ADHD and also the sort of the degree of hunger. So this leads to difficulties with attention span. So it’s important not just to think about attention span when you’re doing homework, but also attention span when you’re doing something that’s fun or when you’re doing a very simple everyday task.

So a lot of children will have difficulties when they’re asked to go and tidy their room. Some will refuse. That’s not an indicator, but if they go willingly and then you find them two minutes later doing something else that may be a problem with attention. Then there’s the ability to be still, quiet. Obviously, we’ve already asked about mealtimes often and we know about school times. There’s also, you know, interesting things like going to the barbers or the hairdressers. Are they able to sit still? How difficult is it for them to sit still in those context, or on the bus?

Just think about times in that child’s life when they need to be still and need to be quiet and whether they manage it and then, of course, there’s waiting. So they may wait, have to wait in a supermarket queue or they may need to wait to talk when they are in a group context. So think about those things, those are the sort of core difficulties, but you just need to adapt your questioning to the context of the child, to the age of the child and what the expectations are of the child.

Then there’s motor and self-care skills. Now, this is really interesting in that motor skills and self-care skills are often bundled in together, and that’s absolutely understandable, but self-care is the ability to dress and wash and clean and pack your bags and organise yourself, [inaudible 00:37:55] by so much more than your motor skills. Motor skills are necessary to do these things, but they’re not sufficient. So a lot of kids will have poor self-care skills, but actually their motor skills are absolutely fine.

Nonetheless, it is important to understand and know at this point and often the question is, okay, he finds it hard to get dressed. Is it because he literally can’t get the trousers on or he gets them the wrong way round or he, you know, gets really awkward and kind of fingers and thumbs? Or is it because he’s too busy or he’s angry or he doesn’t want to go to school? So that’s the question, really, in a way.

Nonetheless, if you’re thinking about motor skills and I’ve sort of talked in my lecture on child development, why it’s important that motor skills are part of developmental assessment and why they’re important in mental health services. There’s top two areas, really. One is the chance of sort of everyday activities and they tend to be more gross motor kind of activity. So that will be going to the playground, riding a bike, playing football or if other sports are available. Just generally, the sort of big movements, the big things that they do throughout their life, and then if you’re thinking about finer work, obviously the fine work is important for self-care, so brushing your teeth, using cutlery, tying shoelaces.

Okay, that’s all important and that’s motor skills, but outside of that a lot of the fine motor skills come into play when you’re looking at broadly schoolwork, obviously not always done at school. So handwriting, drawing, cutting things out, that sort of thing becomes very important. And again, it’s very important partly because it will give you an indicator that this may be a kind of neurodevelopmental history that’s emerging, but also actually having these difficulties really doesn’t help your psychosocial function and will worsen your behaviour and worsen your emotional state. So this is important stuff, even if it’s not your area of expertise.

Now I’ve put this stuff together because it just seems to cluster within a particular group. So this is children who are rigid. Now, immediately when you think about somebody who’s got a rigid cast of mind you think about autism, but a lot of kids are rigid but don’t have autism because the rigidity of autism, which often comes out as a negative attitude to change, difficulty with change, needing a lot of priming for any sort of transitions is driven or the insistence of sameness in rituals or watching the same movie over and over again and increasingly in the sort of modern generation of watching the same YouTube video over and over again.

Those are driven by anxiety broadly. They are driven by a fear of uncertainty, driven by, kind of, almost driven positively by the comfort of these rituals. I think that’s why I put this picture up. This is a ritual conducted every few years on the banks of the Ganges in Varanasi and it’s intensely comforting. This sort of ritual we’re all for because it’s socially mandated, but actually in the same way that you get comfort from a religious ritual if you’re so inclined.

So an autistic person will get comfort from their own rituals, and that’s important. Nonetheless, not everyone has rituals. Not everyone who has a fear of change is autistic. Not everyone who’s rigid is autistic. An anxious person who’s not autistic can also be rigid and that’s important. It’s particularly important when you think about children with, say, developmental language problems or ADHD who are rigid and everyone sort of thinks, oh they’re also autistic? Actually the point is that they’re anxious and we’re very bad at picking up anxiety in those sorts of children who are often behaviourally very difficult, and we don’t think of them as having emotional difficulties, but often they do and I think it’s very important to think about those.

Broadly when you’re thinking about, once we’re thinking a little bit about anxiety we obviously need think about fears and phobias in a way that’s probably very familiar to mental health professionals, but a lot of this partly because the sensory needs, sensory modulation needs, which I talk about my previous lecture, are very common in autistic spectrum disorders, but also because there seems to be at some very deep level, which is kind of common to all of us, a connection between our emotional and our sensory selves.

So if we think about it, if we are emotional, if we are feeling angry we’ll clench our fist, if we’re feeling worried we’ll kind of wring our hands. So there’s a real deep and it does seem to be some neurological correlates for this and some sort of, kind of, brain connections that are very strong between sensory inputs and your emotional state.  So I think this fits for that reason, partly also because when you have a sensory modulation difficulty, so you can’t turn your senses up and down, everything can often feel too much.

So even simple things like I’m wearing a collared shirt. Some children can’t cope with a collared shirt because it’s constantly irritating them. They can’t switch it off. Some children can’t cope with socks with seams, or they can’t cope with particular textures and they can’t cope with particular noises. So those things are very important, partly because they reflect an underlying connection with anxiety, but also they’re very anxiety provoking and you can get into vicious cycles of negative behaviours which are then cycle back and increase the child’s emotional agitation, which makes them more sensitive to sense and so therefore, you go round and round and round. So that’s why this fits in here and is, I think, very important to ask about.

So then we move on to what you actually have to ask the child. I think it’s really important to talk to children, if you possibly can. With older children and you can start immediately and I like doing that a lot because it makes them feel kind of special and at the centre of things, but also it gives you useful information? Now, I tend to make this a little bit structured and I tend to ask roughly the same questions all the time, partly because I want to know, okay, what does a typical six year old say about his friends, for instance?

And I’ve got a larger sample I can kind of judge these things better, but broadly I ask what they like at school, what makes them happy at school? If there’s anything that makes them annoyed or sad and what they like doing, and then obviously if they mention friends. You can ask about their friends. I’ll talk about friends in a minute. At home ask the same questions. So the reason for that is that the family don’t feel like you’re being inquisitive inappropriately about home and that anything makes you sad at home, because of course, that’s really a safeguarding question and it’s a sort of tricky, trickery way of getting that question in, but actually their impressions of home and school which you don’t have to take as in any way accurate, because more often than not.. but their opinion is really important nonetheless.

And just to talk particularly about friends, I think is really important, particularly thinking about autism spectrum disorder or social communication difficulties, social understanding difficulties is to ask about what the child sees as a friend? What it is they like about a friend, because if it’s oh he also likes Pokémon, that’s kind of more instrumental. Whereas if it’s he’s really funny and he’s nice to me that’s more, kind of, a personal. That’s more to do with the relationship.

So it’s nuanced, but that’s a very important question. So pay attention when you’re talking to a child to what is said, how it is said. You will pick up certain communicative features. So is the child rather monosyllabic? Do they go off on one? Do they give you lots of information you don’t need? Are they happy to talk, are they shy? All those things are really important, but also what is not said and very often you have to kind of keep the parent quiet, and then at the end of the conversation you have the child saying, I’m going to talk to your mum now or your dad, and they’ll go oh everything you said is nonsense. No, it’ll be fine.

But the fact that they are not telling you about somebody in the house, they’re not saying somebody lives there is important. So then just skip on to do some direct assessment. I’m not going to describe in detail the direct assessment that we do in our clinic for two reasons. One is I haven’t got time and also it doesn’t massively matter. There is no perfect battery of tests. The point of doing direct assessment of a child’s developmental skills is to get an estimate of their cognitive level, and the reason you want to do that is that you want to adjust your behavioural and emotional expectations to their cognitive level. There’s no good having the expectations of a nine year old if you have the cognitive skills of a six year old. You’ve then got to adjust yourselves, not only to the fact this child is six, but also that they are around children who are three years more advanced than them, and that will have an effect on their behaviour.

So it is important to get that, but anything you can do, you know, anything you can do to try and get an estimate of that is absolutely valid and there’s lots of things out there, but it’s also not only important to get that kind of estimate, but also to know, to see what the child does when they’re presented with difficult things or boring things. One of the things I use, the coloured progressive matrices, I value not only because of the information it gets but also because they’ve got to do 36 consecutive puzzles, and particularly for the children with ADHD that gets really dull and their response to the dullness of it is diagnostically useful.

In the same way, I use a vocabulary scale, not because it’s the most brilliant language test in the world, but because it’s fascinating how children define different words and how they respond to the fact that they eventually can’t understand the words because they’ve got too difficult. How they respond to that is really important.

So I think it is important in some ways to have some attempt to work out, test different parts of the child’s cognitive skills. Just so you know, okay, there’s a bit of a spike here. Are they good at this and not so good at this, partly because you may pick up things like a language disorder, but also because, like, okay, he’s just generally a bit spiky and his performance really depends on the task? That may be a very soft marker for neurodevelopmental problems.

Then, of course, all the time you are observing this. I don’t have any separate time for observation and observing the communication, observing how the child responds, how they relate to the adult? You know, is there affection? How does the adult talk about the child, not just factually, but in terms of the tone of how they’re talking about them. So some families will kind of out of their way, kind and positive about a child who’s having very great difficulties and that’s lovely and also positive for the future.

But other parents will sit down and immediately launch into a litany of how difficult this child is and how frustrating they find it. That is not only probably harmful to the child, diagnostically useless and a waste of your time. So stop, put a stop to that and ask the questions that you need to ask, because those are the diagnostically useful ones, but of course, it’s also important to look at the child’s behaviour. I make my assessments boring for the child, so I see what happens, see if they’re wandering around, whether they press the alarm button.

Every child who presses the alarm button in my clinic has subsequently got a diagnosis of ADHD, not because I immediately give them because they press the button, but it is an indicator that they are curious and impulsive. Physical examination, it’s not compulsory to do a full physical examination in all children. It can be helpful. So if you have suspicion of a genetic cause it can be helpful and you may pick up some neuro-cutaneous markers or you may just look at a child and think there’s something unusual about this child’s features, facial features, for instance, or they’re unusually short or unusually tall, high weight, low weight and that may be a clue to underlying genetic things.

It’s useful to know, particularly if you have a child in a socially vulnerable family and what their general health is like, and I’ve put the word neglected, which is something that I have caution about, as I’ve explained in my previous lecture, but yes, if you have a child who has poor dentition, whose clothes are dirty and who smells that is an important clinical finding because it indicates difficulties with looking after this child.

And of course, if you are thinking about neurodevelopmental problems you quite often find some neurological correlates. You’ll often find some soft signs of co-ordination difficulty particularly and that can be a really important marker for whether or not you have a neurodevelopmental pattern here.

So I often do very little, but you always have to have a think about the child’s physical examination, and then very often you don’t have all the information you require to complete your assessment. Either you need more information just generally for what the child’s needs are or you have a specific diagnostic question to answer and you need more information for that, and that’s all fine, and there’s various things that are helpful. I’m sure most people who listen to this know about the strengths and difficulties of these questionnaire because it’s so familiar, we almost devalue it.

It is very, very good and it’s actually got rather good correlates and kind of validity when you’re looking at ADHD particularly. Particularly if you get several from on the same child, but obviously the most used questionnaire in ADHD is the Conners, but the Snap is also worth mentioning because partly because it’s free. However, the Snap is very closely aligned to the particular criteria and I do worry that you have what I call kind of exasperation syndrome, where you have a question about a child that you’re exasperated with and you tick all along the right hand side because that’s where the yes, he is all of these things and more and please help me and that will lead to over-diagnosis if you’re not very careful. Whereas the Conner’s more cleverly set up.

The RCADS, I think is a very useful, however and free to download questionnaire on anxiety and depression which I use quite a lot to guide possible mental health assessments and it can pick up things where you weren’t necessarily expecting them, but the most important information gathering is talking to schools. Talking to your colleagues in the other sectors.

So if you are sitting in CAMHs service and you know the child has been seen by occupational therapy, you have to talk to these people because they will have insights, and I think the other thing about these information gathering and it frustrates me when people think about them as like a test or like an examination or a scan. They’re just putting someone’s opinion into an algorithm and producing a number.

That is all they’re doing. So if somebody’s opinion is wrong the number will be wrong, and as I’ve explained previously, you’re triangulating it. This is just one of your points of information and just somebody’s view. That said, the more the merrier in terms of diagnostic accuracy and just kind of understanding the child’s needs. So how do you put it all together?

Let’s say you haven’t got these questionnaires back yet, and you’ve completed your assessment. What you’ll have is the referral form, which in our case has got a lot of information on it. You’ve got what you see in front of you. You’ve got the families information. You’ve probably got quite a lot and what you’ve got is three things, you can have a go at a developmental profile, which may not be diagnostic at this point but you know the child’s strengths and difficulties because you’ve done the assessment. You know a bit about the psychosocial context and you know a little bit about how other people respond to this child and what’s been done, and you sort of put all those things together and say, well, look, can we put these things together to explain the behaviour? The functional difficulties or you know, I put under behaviour. What I don’t mean by that is behavioural problems.

I just mean how the child reacts, how the child behaves during their life, and very often you can make sense of it using those three things. And therefore, what you can say is, okay, well, apart from that, we know what the behaviour has being. We think we can explain it using these things. What can we change about these things? Do we need to look at the child’s profile and maybe do a diagnosis and do some management about that, but as importantly, do we need to change the context? Do we need to support this family better? Do we need to think about the rest of the mental health, the mental health of the rest of the family, and also do we need to change people’s responses? So a child, for instance, who’s being treated as naughty at school or badly brought up or, you know, whatever, if you put a neurodevelopmental framing on it and say, look, he’s not doing this stuff on purpose, he’s finding this difficult.

Of course he needs to try, but you need to help him try then that can, with the correct support and training, make a big difference. So those three elements are all important and we shouldn’t just pick one of them out in order to work back and help, which is really what we were all about.

So just to go back a little bit about diagnosis because they are important. A lot of the diagnosis that we’ll be making neurodevelopmental are structurally quite similar. So they identify a type of brain and each type of… So autistic spectrum disorders it’s a type of brain where there’s a difficulty with understanding other people and more broadly a difficulty with making sense of the world in a way that is inductive. So making sort of educated guesses about what’s going to happen, a subset of which is making educated guesses about how people are thinking and how people are feeling. That’s autistic spectrum in a nutshell. As I’ve said, ADHD is more about a hungry brain. A brain which is very kind of insatiable and wants stimulation all the time and it’s hard to control and keep a handle on.

Developmental co-ordination disorder is a brain where it’s difficult to co-ordinate and accurately use sensory inputs and pre-programmed motor programmes and motor sequences to do everyday tasks, and developmental language disorder is essentially your language ability. Your language development hasn’t developed to the extent that you can communicate using words at a level that’s expected for your age. The thing all of these things have in common is that they’re all spectrum conditions.

There is no cut off. There’s no clear blue water between people with and without the condition. There is a range from typical too extreme in any of these kinds and also there are all types of brain. They’re not sets of symptoms, although the criteria often treat them as sets of symptoms. They are kinds of brain that tend to present in certain ways and in all of them it’s important to emphasise that these are not necessarily sort of broken or wrong. These are just different and I think that helps families an awful lot.

And all of them require essentially to be along a spectrum as a reasonable amount. Often what I would say to be far enough along a particular spectrum that it’s causing them problems, and that seems to me to be the foundation of any of these kind of diagnosis. So there is the autistic spectrum. There will be children who are on a grey area. They’ve got not great social communication, but that’s not their main problem. So perhaps they shouldn’t get a diagnosis because their main problem is something else.

If it’s causing them difficulty, it may be helpful to give them a diagnosis. Learning disability is different and I’ve just pointed that out. So that is more based on the child’s cognitive skills and there is a criteria based in two standard deviations below the mean in terms of their cognitive skills overall and functional difficulties. So again, it’s kind of a spectrum, but it’s much more tied to a particular measure. The point is, though, about these diagnostic assessments is that we do get quite hung up on particular elements.

So, you know, for autism we get very keen about the ADOS and so forth, but if you look at the criteria and you look at the guidance there are no compulsory elements of any of these diagnosis. So I think it’s important to go back and strip down what we’re looking for. We’re looking for where the child is along whatever spectrum we’re looking at and whether their position on that spectrum is causing them problems and therefore, whether a diagnosis is going to help this child.

That’s the key question that we need to answer. We mustn’t get distracted by all of this technical stuff. Nonetheless, there may be some further assessments required. Now this is very much in the region of my clinical experience and to an extent my personal opinion. I like the ADOS but reason why I like the ADOS is, so the ADOS to explain is a structured interaction and observation schedule which is used in the diagnosis of autistic spectrum disorder. It’s good because actually because it’s quite an efficient and quick way of getting an awful lot of information about different sorts of interaction, different sorts of skills and deficits within the child.

There are problems with it in that it’s only validated… The population of which it was validated were all male. So it’s not actually that brilliant at diagnosing girls. Another reason why girls have difficulty with obtaining a diagnosis and also I think it is perhaps a little old now and a little out of date and probably needs renewing. The ADI, the Autism Diagnostic Interview is a very lengthy interview which focuses very, very closely upon the features of autism. My objection to it is that if you have obvious autism you don’t need to spend three hours talking about it.

If you have borderline autism, it may well be that actually the important thing is all of the other stuff around them, which the ADI is not good. So for me the ADI is not a good use of time. That’s my personal view. You may want to get some more language or cognitive skills, cognitive assessment if you have access to them. People get very worried, particularly in the NHS about a lack of access to these formal assessments, but actually we need to think, is it actually going to help the child? Is it going to change what we do? If we know that let’s say we’ve done a bit of a screen and we think there’s a language problem, fine, do some language intervention. Is it going to actually change what we do, change what we do diagnostically if we know that they are two or three years behind. You know, we got finer details about that.

Is it not more helpful just to try and help and put our resources into intervention and help. Just raising the possibility that actually we can focus too much on our own kind of accuracy and doing all of this formal stuff. Occupational therapy, I actually refer a lot of people to and actually a really helpful service, often with people who particularly for young children, young people who have self-care difficulties, and they don’t need to necessarily just be to do with co-ordination.

Although occupational therapy know a lot about co-ordination. Just any kind of difficulty with the self-care occupational therapy can be very, very helpful for, and the point is they are not necessarily diagnostic. They want to improve function. So, again, it very much goes along with the kind of thrust of this talk. We do as paediatricians, a lot of referrals for mental health assessments. I just want to flag that up, that this is a very important interrelationship and I think it’s very important that there is an ongoing relationship, both locally and at a national level between paediatric services and generally physical health services and mental health services, and this is a real point, a very important point of context. I want to briefly touch on genetics. I don’t actually do genetics studies very often. Generally speaking, if we have specific indicators from physical examinations, so a child is very tall, very short, has any unusual features about them we may do genetics and also will do genetics routinely on anyone who is in the learning disability range in terms of their cognitive skills.

That in terms of my experience of CAMHs clinics or mental health clinics generally is a fairly small number of children. So you may not be doing all that many genetic referrals. So that’s what I wanted to say. I’ve talked a lot about what to ask, and I’ve discussed a lot about the assessment of diagnosis and really whether that’s something that you need to go into.

I’m very happy to come back and talk about specific diagnosis and discuss things. Very happy to interact with this audience when eventually when this goes up, but I wanted to make a few closing points. The first is that developmental assessment what fascinates me about it is that you have very simple questions. You’re not asking complex and deep questions. You’re asking about what they like on the bus. You’re asking about what it’s like taking them to Asda, but from that you get this very complex picture, which doesn’t always tell you exactly what you need to hear, until you’ve put it all together.

So a lovely phrase a colleague once used, is that diagnosis it was in the context of autism, but it can be applied anywhere. Diagnosis and assessment here is like doing a jigsaw of an elephant in that all of the pieces are grey and you can’t see what it is until you’ve finished it, and I think that’s true of this as well.

The point, though, is that we can get very wrapped up and I’ve said this a few times, so I don’t apologise for it. We can get very-wrapped up in our own cleverness, in our own assessments and this diagnosis or that diagnosis but the point is to help. The point is to help families and children who are struggling to function better and if we’re not doing that we’re wasting our time.

So focus on using any diagnosis, using a new assessment as a tool to help these families. It’s got to be always our focus, and so for that reason I do use diagnosis and we want to talk about it, but it is a tool that we take up when we think it’s going to help and we put down again if it’s not helping anymore. As I say, very happy to discuss any of the views expressed in this talk which are not the views of ACAMH, but the views of me and to go on and talk about anything else that people want to talk about.

Thank you very much.

 

Discussion

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Very good and clear presentation. Would love to learn more from Dr Max.

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great talk, I’ve directed our new SPrs to it, (community paediatrician)

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