Assessment and Management of Autistic Spectrum Disorder (ASD)​ in Children and Adolescents​

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In this lecture Dr. Zoe Ellison-Wright MBBS MSc MRCPsych, Consultant Child & Adolescent Psychiatrist, Dorset Health Care Foundation NHS Trust, discusses:

  1. Basic principles of ASD presented in a through and comprehensive way
  2. Suitable for trainees and generic practitioners, C&A psychiatrists GPs, Paediatricians

ACAMH would like to thank Dr. Nermin Khalil (SLaM) for leading on the creation of this series of videos.

ACAMH members can now receive a CPD certificate for watching this recorded lecture. Simply email membership@acamh.org with the day and time you watch it, so we can check the analytics, and we’ll email you your certificate.

Dr. Zoe Ellison-Wright
Dr. Zoe Ellison-Wright

Dr. Zoe Ellison-Wright is a consultant child and adolescent psychiatrist working in a rural area. Her interests are depression, anxiety disorders and eating disorders in children and adolescents. As part of a multidisciplinary team, she works closely with local colleagues in education and social services.

 

Transcript

Thanks for listening to this talk, I hope you find it useful. I’m going to be talking about the assessment, and management, of autistic spectrum disorder in children and adolescents. I’m Dr. Zoe Alison Wright. I’m a child and adolescent psychiatrist working in a generic CAMHS team in rural North Dorset. I trained at the Maudsley Hospital and I worked in the Children’s ASD Team there. So I was involved in lots of ASD assessments, and I’m trained in using some of the assessment tools. The autism diagnostic interview, the ADI, and the autism diagnostic observation schedule, the ADOS.

In my current clinical work, I’m not actually involved in carrying out ASD assessments, but I do screen cases, regularly, in my day to day work, and then I’d refer them on for the multidisciplinary assessment. In fact, about 50% of my caseload, of young people, are either being assessed for ASD, or have already been given the diagnosis. So a major part of my work involves treating comorbidity. So, in the talk today, we’re going to cover a number of areas.

First of all, what ASD is, and looking at the diagnostic criteria. Then looking a bit at epidemiology and risk factors.

Then I’ve got [inaudible 00:01:12] when to suspect ASD in the different age groups of children. We’re going to then discuss the NICE guidelines for the assessment of ASD, and, then, screening tools that can be used. We’ll look at the differential diagnosis, and, then, different elements of management. So what is ASD?

It’s a group of developmental conditions involving a triad of impairments. The triad is social interaction, social communication, and restricted interests, or repetitive behaviours. So, just to explain those areas, a bit more. Social interactions, that’s that’s when young people find it difficult understanding social rules, or behaviours, or relationships. So they might seem indifferent to other people’s emotions, and not understand how to take turns.

Social communication is difficulty with verbal, and nonverbal, communication, such as, not really understanding the full meaning of a gesture, facial expressions, or tone of voice. And then restricted interests. That’s difficulty in the development of interpersonal play, and imagination. So having, maybe, a limited range of imaginative activities, maybe just copied activities, and they could be quite rigid, and repetitive, in their activity. So, in this talk, I’ve referred to autistic spectrum disorders, but some people now prefer the term autistic spectrum conditions, which is perhaps less stigmatising.

So you may see ASD or ASC, and it refers to the same thing. Asperger’s syndrome is similar to autism, but there’s no language, or cognitive delay. And, actually, more recently, that term has not been used so much. Then atypical autism is a diagnosis made when not the full criteria are met. So either the age of onset is after the age of three, or maybe the three triads of impairment aren’t fully met. Ok, so, before we go on to actually look at the real detail of the ICD 10 criteria, there’s a link here to a really good film called The Birthday Party.

It was…it has been jointly funded by the Welsh government, and Cardiff University. And it demonstrates the scene of a children’s birthday party and shows children with lots of the different impairments. And I think when you actually look at the ICD 10 criteria, it’s quite dry and maybe difficult to understand, exactly, what that means. So it’s really useful to watch this, it’s just under 20 minutes long.

And, as I say, you can observe children with different signs, which, I think, is really useful. So worth watching that before going on to the next slide, which is a bit heavy. So this is the slide that shows the ICD 10 diagnostic criteria for childhood autism. So there’s three different sections here. The first is abnormal, or impaired, development, that needs to be evident before the age of three. So that’s really important. Needs to be before the age of three and in at least one of the following areas.

So that’s receptive, or expressive, language, as used in social communication. Development of selective social attachments, or a reciprocal social interaction, and functional, or symbolic, place. So, you need to have abnormalities, or impairment, at least, one of those areas.

And then in B, we need at least six symptoms from these clusters.

So in cluster A, we need at least two, in cluster B, at least one, and in cluster C, at least one. So A is qualitative abnormalities in reciprocal social interactions. That’s not, adequately, using eye to eye gaze, lack of peer relationships, not sharing interests, lack of modulation of behaviour according to the social context. So, again, it’s easier to see examples of that really in that film I just referred to. So there need to be two from that section. And in B, there needs to be one. That’s qualitative abnormalities in communication.

So, sort of, failure to initiate, or sustain, conversational interchange. So, that’s the to, and fro, of conversations. Stereotyped and repetitive use of language, lack of varied, spontaneous, make believe play. So, you’d be looking at having one of those. And then the third section is restricted, repetitive, and stereotyped, patterns of behaviour, interests, and activities. So, that might be a preoccupation with restricted patterns of interest. So, wanting to play a certain game over, and over, again, compulsive adherence, to specific rituals. So, getting really distressed, if rituals are disrupted, repetitive motor mannerisms that involved either hand or finger flapping and twisting, those, sorts of, behaviours, or even complex body movements. And then, preoccupations with non-functional elements of objects.

So touching objects, you know, touching a toy, rather than actually playing with it in an imaginative way. And then C, which is the last criteria is that the clinical picture isn’t attributable to other varieties of pervasive developmental disorder. So that’s rather a heavy slide, but a useful, kind of, a reference, really. So that’s ICD 10. DSM 5 is the American Diagnostic Classification that was published in 2013. In that the term Asperger has actually been removed and replaced with autistic spectrum disorders.

And it has also been recognised that sometimes the symptoms aren’t so obvious in early childhood. So, less emphasis on that need for symptoms to be really evident, before the age of three. And then ICD 10 has now been written, and published, in the UK, in 2018, but, really, not fully adopted yet. So, it’s similar to DSM 5 in that, again, Asperger’s has been removed. And there are, actually, two, rather than three, categories. So, the first is, difficulties in interaction, and social communication, and the second is, restricted interests, and repetitive behaviors.

So it has just changed from those, sort of, three categories, to the two. And there’s also more of an emphasis on sensory issues, and, also, clinical judgement being used, rather than needing to have, like, a specific number of symptoms. So those changes aren’t, sort of, fully implemented yet, but that’s the way things seem to be moving.

Just a quick slide on Asperger’s syndrome, because it is a term that’s still used quite a lot, and it’s the same criteria as autistic spectrum disorders, autism, rather. But there’s no general delay, or retardation, in language, or in cognitive development. There may be communication difficulties, and language may still be abnormal, and unusual, but it’s not delayed, as such.

So this is a brief slide about the epidemiology, and then, later, coming on to the risk factors in ASD. It’s thought to affect about one to 1.5% of school age children, and it’s more common in boys. So 5:1 is the ratio of boys to girls. There has been quite a lot of discussion recently about it being missed in girls. And so, maybe the ratio is slightly different to that, but that’s generally what’s recognised.

And genetics is really important in autistic spectrum disorders. The heritability, in the population, is about 90%. So the rate is about 25 times higher in the siblings of affected children than in the general population. And that certainly fits with my clinical practice, where, quite often, I’ll see families, where there’s more than one sibling, which, obviously, puts a lot of pressure on families. And it’s also not unusual for their presentations to be very different. So, you know, just because a parent is used to, sort of, adapting to one child, then the next child that comes along might have very different needs, even though they also have a diagnosis of ASD.

Probably most cases are the result of a combination of common variant moderate risk gene alleles, or, from a few rare high risk alleles. But the detailed genetics hasn’t really been established yet. And then in 5%, there’s a single gene disorder, or a chromosomal disorder, that’s responsible, such as Fragile X. And these cases are identified by genetic testing.

I guess it’s important to say that prevalent studies have shown that the rates of ASD have been increasing, maybe a variety of reasons, probably broadening of the diagnostic criteria, improvement in service availability. But, also, more of an awareness, amongst professionals. So teachers, GPs and the public. So, that might account for that. So now we’re going to look at risk factors a bit more. So the first risk factor is having a sibling with autism, as I mentioned before. Second,  if a child has birth defects, such as cerebral palsy, that increases the risk, as does a gestational age of less than 35 weeks.

Maternal use of Valproate in pregnancy, which has, obviously, been in the press, a lot, recently, is a risk factor, and, also, chromosomal disorders, so Down’s Syndrome. And genetic disorders, such as, Fragile X, Muscular Dystrophy, neurofibromatosis, and tubular sclerosis. I just added in the slide here about ASD in girls, because, in my clinical practice I think they are missed when they’re younger.

And so, are presenting later, maybe with comorbidity. Some, of course, have quite severe symptoms, from an early age, and the classic signs, so they’re usually picked up quite early. But some have much more subtle difficulties. They may be, kind of, quite quiet, and shy, at school, and under the radar, but their behaviour can be more challenging, at home. So when you’re looking at assessing that child, you may not think of ASD, initially, because the presentation isn’t so apparent in school.

And, in fact, sometimes, parents feel blamed, as though the behaviours that are there, are to do with their parenting. And you have to look more closely, really, to pick out the signs of ASD. I’ve found that they do present with comorbidity, often as adolescents. So I’ve seen young people with eating disorders, or gender identity disorders, substance use, emerging personality disorders. Again, when we’ve looked, in more detail, there are, actually, signs that they might be on the autistic spectrum, and we’ve then referred them through, for quite a late assessment.

It’s really important that staff, GP’s, health care staff, can identify the essential features of ASD so that they can then refer on, for specialist assessment. It’s easy to miss more subtle cases, so, we need to all keep it in our minds. And the next three slides are really useful. They’re written by the Scottish Intercollegiate Guidelines Network. And they give us, sort of, clinical clues, for young people of…children and young people, of different ages, of what we might be looking for.

So the first slide is about what what clues you might pick up in preschool children? The first thing is a delay, or an absence, of spoken language. And then, the child looking through people, so, not really looking at a person, in order to interact with them, but just looking at them as though they’re an object. Thirdly, not being so responsive to other people’s feelings. So, even, you know, very young children will take an interest, and show, you know, caring if they see that a sibling, or a parent, carer, is upset.

They might lack pretend, or social, play. So, they might play with other children at, say, a nursery, but more alongside them rather than getting involved in the other children’s play. Or they may just, sort of, watch. Unable to share pleasure. So, typically, a child, if they see an aeroplane, they might want to point that out, to a family member, and share that interest, or, they might have done something, made something, built something, and they want to share that.

And these children might not really be that interested in sharing, or pointing out objects, to another person. They show lack of gaze monitoring. So, lack of, like, making eye contact. And then they might display unusual, or repetitive, hand, or finger, movements, twisting, or whole body movements, like spinning. And then unusual reactions to sensory stimuli, I find, is really common. So, to loud noises, putting their hands over their ears. To textures of food, so, they might be fussy eaters, or to textures of clothes. So, they’re the things that might make us think about ASD, in preschool children.

The next slide is looking at school age children. So the first thing is persistent echolalia. Now echolalia is normal in young children but persisting into school age children is not so common and it being persistent is more unusual. So it’s when a child repeats, or echoes, another person’s noises, speech, words, phrases. So they may, actually, not understand what they’re saying, but they may repeat things back. And it may actually result in them sounding quite mature because they might use quite lengthy, grown up, sentences, but actually they’re just repeating it. They don’t really understand what they’re saying.

Then they might refer to themselves as you, he, or she, which, beyond the age of three, is not typical. They might use unusual vocabulary. So, often, it’s quite a mature vocabulary, which, again, they might not, necessarily, understand what they’re saying, but they might have just picked it up, and copied it, from an adult. They have a tendency to talk freely about a specific topic.

So these these children might be quite difficult to engage in conversation, but when you start talking about their particular interest, it’s really difficult to to then move away from that topic. They probably find it difficult to play with other children and they might become disruptive. Not what we’ve seen in the school playground can also pick up that they are easily overwhelmed by social and other stimulation. So, again, loud noises, bright lights, too many people, too much excitement.

These children often get really stressed by things like birthdays, and Christmas, because there’s too much stimulation. And so, families end up, you know, naturally adapting, to keep stimulation lower. They can have quite extreme reactions to invasion of personal space. So, that can cause problems with sports at school, or free time at school when children might be, sort of, naturally playing together. And they find it really difficult coping with change. So transitions are a really stressful time. And, I would say, in my practice, we often have referrals of young people with ASD at times of transitions, when they really haven’t coped, and it has led to co-morbid mental health problems, high levels of anxiety, and, maybe, an older children depression.

The next slide is when to suspect ASD in adolescence, which, I think, is a very interesting area. Because we do pick up quite a lot of adolescents who haven’t been diagnosed. Often they’re presenting with co-morbid mental health problems. So I…if I’m working with a young person with quite complex mental health problems who just doesn’t seem to be responding to psychological therapies, or medication, or where things just don’t seem to fit, I always make sure I think back, have we missed ASD?

Because it’s really not uncommon, when you look back, and take a detailed developmental history, to find that that has been missed, for a number of reasons, throughout the years. So it’s worth going back to the beginning and making sure you’ve met with the parent, and taking that detailed developmental history, and speaking to schools. A common time for these young people to present is at times of transitions. So, either, maybe, moving from GCSEs at school, to college, is a really difficult transition, or when relationships break up. And they can often present in crisis, with quite risky suicidal type behaviours. And because they tend to be quite impulsive, it causes a lot of anxiety for families and for professionals around them.

So these young people are often socially naive, and not as independent as their peers. Speech can often be unusual, and they have difficulty making, and maintaining, peer relationships.

Their interests are often quite specific, and narrow, and can be quite unusual, like collecting things. They really like routine. And so, any change to routine, even, you know, even changing a route, the route that they drive to school, or the route they walk to school, can be very stressful for them. And they have difficulty with imagination. We’re now coming to the NICE guidelines for the assessment of ASD in under 19 year olds, which was updated in 2017. NICE recommends that each area should have a local autism team.

And the suggestion is that that includes a medic. So, a pediatrician, or a child psychiatrist, a psychologist, and a speech, and language, therapist. I think how that works, in different areas, is really variable. But the idea is that the team provides a single point of access, for referrers, carries out the ASD assessments, and then feeds back to the families, and provides, sort of, signposting on to other services.

In my area, we actually have two teams. So, we have one paediatric led team and one CAMHS led team. Most cases would go through the assessment by the paediatric led team, but if there’s a co-morbid mental health problem, then it will come through the CAMHS led team. So, obviously, the first bit is that we need to take a history. In my service, we have devised a developmental history screening form. So, that’s completed with a parent, and it’s either face to face, or over the phone, quite detailed.

And it’s really important, with this form, to… it’s not a tick box, it’s not a yes, or no, form, it’s about getting examples, you know? Examples, because, it’s not, necessarily, whether someone…a child has got a symptom, or not, but it’s the nature of it. And, at the end of that form, there’s a section on childhood adversity. Because there is an overlap in symptoms between autistic spectrum disorders, and attachment disorder, children who have experienced complex trauma. And so, it’s really important to just have in your mind what the early childhood experiences have been.

So we’ve also got a similar form for what can be completed by a child’s teacher.

So in the development we need to look at the diagnostic criteria, at the different, sort of, developmental levels. And we need to take a detailed prenatal, and perinatal, history, checking out for those risk factors. And a family history to look, in terms of the genetics. We need to ask about past, and current, health conditions, and then we need to get the information from a child’s school. It’s important to speak to a teacher that knows that child well.

So, you know, if you’re assessing a child that has just moved up to a senior school, it’s probably worth, actually, going back to the child’s junior school teacher and asking asking them the questions. In my team, so, we would complete these two screening questionnaires and then if there was enough to go on, we’d then refer them to the specialist team who would then be using standardised assessment tools. So, as I said, I’m trained in a couple of these, but the trainings for these are quite lengthy.

And you then, kind of, do videos, to check for validation, and reliability. So, there’s different options available. One would be the autism diagnostic interview revised, and the autism diagnostic observation schedule. So the ADIR would be the detailed development questionnaire with the parent and then the ADOS would be the interview observation with the child. Another one is the Diagnostic Interview for Social and Communication Disorders, the DISCO, and another is the Developmental Dimensional and Diagnostic Interview, the 3di. So, they’re all options.

We then move on to examination, and investigations. So, obviously, it’s really important to interact with, and observe, the child. And that can be…that could just be your own observations, initially, and then moving on to a more standardised assessment tool, like the ADOS. In CAMHs, of course, the mental state examination, particularly, in adolescence, is going to be really important, because of the very high comorbidity, in this group. Physical examination is generally something if I had any concerns about any of these, I would ask a paediatrician to see a child.

But the things you might thinking about are skin stigmata, which is due to neurofibromatosis or tubular sclerosis using Wood’s lamp. Any signs of injury, self-harm, child maltreatment, or any dysmorphic features, that might suggest something specific. And, again, if I had any any concerns, about any of those areas, I’d ask for a paediatric assessment. In terms of investigation this is, generally, something a paediatrician, or paediatric neurologist, would do, but they might decide to do genetic testing. If there was suggestion of Fragile X, they might do an EEG, because of the high risk of epilepsy, so if you have got any concerns about seizures.

And then, if a child, above three, regresses in their language, or, if any child, of any age, regresses, in motor skills, then I’d always ask for a paediatric…a paediatric neurology assessment. We’re now going to look at the differential diagnosis and comorbidity in ASD. And I use the Multiaxial framework, with five axes, particularly looking at axis one, clinical psychiatric syndromes, but, also, specific disorders, intellectual level, medical conditions, and psychosocial problems.

The most common differential diagnosis I’ve probably come across in CAMHS would be depression, obsessive compulsive disorder, other anxiety disorders, and attachment disorder. I find, particularly, in adolescents, who present with severe depression, or [inaudible 00:26:02] anxiety, can be very impaired, in terms of their functioning. And because we haven’t met with them before they develop a mental health problem it can be difficult to tease out whether this might…they might have an underlying ASD as well. So the crucial thing is to ask about their pre-morbid history, and get that early development. Because it might be, actually, that they have had some difficulties throughout their lives.

Or it might be that this is actually quite new, and they were functioning really well, and didn’t have any features of ASD, prior to their mental health difficulty. In terms of differentiating between ASD and attachment disorder, I find this an issue that comes up, not uncommonly, in CAMHS, and causes quite a lot of stress, really. Because the presentation can be really similar. And for children who have experienced a lot of adversity, maybe witnessed domestic violence, or experienced abuse, in their early childhood, they can present with very similar…develop attachment issues, and present with very similar symptoms to ASD.

And there can be quite a lot of pressure from families to look for a label like ASD rather than the label of attachment difficulties, which might be a lot more difficult for them to accept. So, I’ll come on, in a minute, to the Coventry grid, which we can use to look at, more subtly, the differences, between those two. Also, of course, when we do the parents’ screening questionnaire, we do ask about adverse childhood experiences, to make sure we’ve covered all those areas, and taken them into consideration.

I don’t think we need to go through the, sort of, details of that, but that’s a useful list. And then here is the reference to the Coventry grid, that I mentioned. So I’m now going to go through a case example, a fairly typical referral to CAMHS of a 12 year old boy, Simon. He was referred because of anxiety, and sleep difficulties.

And I’m going to, kind of, read you through my assessment, and then talk you through how we managed the case. So, Simon is his parents’ oldest child. His mum suffered from hyperemesis gravidarum, so, was quite unwell, during her pregnancy, and she was also taking Citalopram as treatment for anxiety, and depression. Simon was born at 34 weeks, so early, which is obviously one of the risk factors. By caesarean section, as an emergency, because mum’s waters broke and he was a breech lie. He was four pounds and had to stay in hospital for ten days, just for monitoring, but he didn’t really have any major difficulties.

He always slept poorly. He didn’t sleep through the night until he was about 16 months. So quite difficult, stressful for his parents.

His developmental milestones were slightly late, but within the normal range, when you adjusted for his prematurity. He walked at 18 months, and he was toilet trained at two. And his speech wasn’t delayed, but was slightly unusual, his parents recalled. So, for example, at the age of three, he would say something, and then he would repeat it to himself, as a whisper.

And at the age of four, he had a child minder who commented to Simon’s parents that they must find him quite wearing because he would really dominate conversations, talking constantly and not allowing people to join in the conversation. So, obviously, you know, things being picked up below the age of three, or, yes, from the age of three, certainly. There was also a comment that Simon would ask for clarification about phrases. So, he would, for example, hear the phrase ‘We fell about laughing’ and he would actually ask his parents whether that meant that they were literally lying on the floor laughing. And once his parents had clarified what the phrase meant, he’d then use it regularly.

So, actually, he’d end up with a lot of phrases that could make him appear quite mature for his age, and also quite old fashioned. And that made him stand out a bit from his peers. He’d also, sometimes, make comments that were socially inappropriate. He could be empathic, and could pick up on other people’s emotions, and become anxious, and worried, when people were upset, and say, you know, “Are you alright daddy?” make that, kind of, comment.

So there was definitely empathy there. Simon’s parents learnt that they needed to always let Simon know, in advance, about plans, when he was younger. That wasn’t such a problem, when he became older, but, certainly, when he was younger. So he didn’t like going to new places. So it was quite stressful for the family if they went on holiday. He’d always find the first night really difficult. And the family often would adapt and actually go back to the same resort, year after year, because they knew then he could, literally, have the same bedroom, and would sleep better, which meant less pressure on the whole family.

He went to playgroup and nursery and then preschool and generally settled in okay, and was interested in what was going on around him, quite curious. But it was commented that he tended to play alongside his peers, rather than joining in. And he would be happiest with one, or maybe two, children, rather than in a large group. Several of his friends, actually, were on the autistic spectrum, and his closest friend was three years younger than him. He tended to get on better with younger children, or with adults, but found his own age group quite difficult.

He was noticeably quite different, indifferent, to peer pressure. So not really interested in fashion. And he was invited to parties, but not as often as his brother and that was noted by his parents. Now when they went to collect him from parties, he would often seem to be on the edge of a group. There were quite a number of sensory issues for Simon. So he has always had very acute hearing and would complain about noises like people chewing, or humming.

He would get really…I remember him getting really distracted by a clock ticking. So, in school exams, when he was getting a bit older, they’d have to bear that in mind, otherwise he couldn’t concentrate. He was a fussy eater, not liking foods with sauces, and wanting his foods on the plate to be kept separate. And he was also sensitive to touch. So labels had to be cut out of clothes and he didn’t like the seams on socks. In fact, he tended to wear inappropriate clothes, for the time of year, often liking to wear quite heavy clothes, like, you know, a hoodie, with a hood up, even when it was the summer.

He was a bright boy. At the age of 12, he had a reading age of 16, really good vocabulary, and a very good long term memory and recalling things in detail. He really liked to follow rules. So in school would be the one that would go and tell a teacher, if people were being naughty, and, unfortunately, that led to bullying. Just, kind of, thinking about that, and looking at some of the features that made me think about ASD. Speech wasn’t delayed, but it was unusual, and he didn’t understand metaphors.

He did make socially inappropriate comments which, sort of, stuck in his parents’ minds, and needed to be told, in advance, about plans. He found it difficult adjusting to new places, such as, not sleeping, when on holiday.

With his peers, he tended to play alongside them, rather than joining in. And he preferred small groups of friends. Often made friends with other people with ASD and was quite indifferent to peer pressure. He got on well with adults, had sensory issues and exceptional memory and found it difficult to tolerate peers who didn’t obey the rules. Just in terms of my involvement. So, the referral to CAMHS with difficulties with anxiety and sleep. But it seemed really important, with all these signs, that became apparent, of ASD, to clarify whether he had that diagnosis, in terms of adapting treatment for him.

So I completed the screening questionnaires with the parents, and the school, and then referred him on to our assessment team. And he did have a diagnosis of ASD confirmed. And I then also made a diagnosis of generalised anxiety disorder. He and the family were offered psycho-education and signposting. So there was a meeting to feedback from the assessment and explain what ASD meant and give some resources which I’ll cover some of the recommended resources later, websites, and support groups. The parents attending an ASD specific parenting workshop which helped them to understand and make adaptations at home.

And they actually also went on our Parenting Through The Senses Course, which is a course for parents of young people with ASD, with sensory needs, because, in this particular case, there were quite a lot of sensory issues. I should also have said that the diagnosis was also fed back to school, which was really important so that they could put support in place.

In terms of mental health issues, Simon had had difficulty with anxiety, for several years. At the age of seven, he developed tummy aches, became quite worried about what the cause of the tummy aches was. He was seen by a paediatrician and had investigations, but there was no organic cause found. He had also been bullied at primary school, and didn’t want to attend, and became quite anxious about attending, tearful in the mornings. And then he had these sleep difficulties for a long time, problems falling asleep, waking in the night and then not being able to get back to sleep.

And these were impacting on him, because he’d constantly be worried about not being able to sleep and how that would affect him at school, but the family were really struggling with that. He was insisting that they sat with him, while he got to sleep, and then calling him in the night, when he woke up. Obviously couldn’t manage sleepovers as well. So he actually began seeing our well-being practitioner and had some adapted cognitive behaviour based therapy for sleep and anxiety management and because he’s quite young that involved the parents as well.

And he responded very well and engaged in that.

I did actually also prescribe Certraline, a low dose, initially 25mg, then increasing to 50mg, for a short period of time, to help over transition, particularly a transition into the next year group at school, which he was finding particularly difficult. And he responded well to that too. I hope that case example has been helpful.

Now we’re going to look at the management of ASD relating to NICE guidelines published in 2013. They recommend that there’s a local autism care pathway in place to ensure consistent support across health, education, and social care. In my experience, this works better, in some areas, than other areas, but it is absolutely vital for the children with most complex needs. The autism team should ensure that each child with ASD has a key worker that can coordinate their care and develop a  care plan. And then there’s four sections in this area which we’ll look at, in more detail. Psycho-education, parenting programmes, promoting learning and managing challenging behaviour.

After this we’ll look more, in more detail, at the mental health aspects. So psycho-education for families involves optimising the home environment, looking at support for siblings who may not really understand the difficulties that they’re experiencing, managing sensory issues, and managing challenging behaviour. We like to give written information. It’s a lot for families to take in when they’ve just received the diagnosis. So we give written information about local, and national, support groups. So the National Autistic Society, for example. Education sessions, ASD specific parenting programmes that might be available, and, then, opportunities to meet other families with young people with ASD.

So there are often groups locally, that will be very individual, in the area. Also, whether there are things like leisure activities specific for children with this diagnosis. Families should be given information about having a carer’s assessment as well.

In terms of parenting programmes, there are some really validated, well validated, parenting programmes available. Children with ASD have specific needs, and I think my experience is that parents find the tips that they get given in these, and the support from other parents that attend, as well, really useful.

So there’s EarlyBirds, which is for preschool children, and parents. EarlyBird Plus for parents of four to eight year olds, Cygnets, for parents of seven to 16 year olds. And then there’s also the Incredible Years Parenting Programme, has a course that has been adapted for ASD, which is also useful, and that’s based on social learning theory, and supports the parents in forming relationships with their children. All these are based on…they’re play based strategies to increase joint attention, engagement, and reciprocal communication with the child.

And they include strategies for managing quite challenging behaviours and encouraging parents to make sure they have time to look after themselves. The next section is promoting learning. This is crucial. Schools, and the right support in schools is really crucial. Thinking about a child’s arousal level, thinking about them needing clear explanations, their need for routine, visual techniques, and sensory integration skills. So the learning environment is really important to think about, particularly, maybe visual supports, rather than just words.

So pictures, symbols that are meaningful for the child, can be really useful. These children need their personal space. And you need to think about their sensory sensitivities, so, loud noise, for example, bright lights, can be really stressful for them.

It’s about encouraging children to gain skills like social skills, in particular, which they find difficult. They might be very academic, or they might not struggle with the work, but the social skills can be a real problem. The other thing about children with ASD is that they find generalisation difficult. So they might learn a skill in a particular situation, but they don’t generalise that to another situation. So the skill has to be learned all over again, which is important to recognise.

Structured social environments need to be thought about. So specialist youth groups, for example. We have one in our area which is really popular with young people. There are some interventions mentioned in NICE that are not suitable for managing core ASD and, I think, it’s worth mentioning them. So antipsychotic medication, antidepressant medication, anticonvulsants and exclusion diets are not recommended. That’s for the core elements of ASD. Just briefly about managing challenging behaviour, which we may talk about a bit more later in the, sort of, CAMHS specific area.

But challenging behaviour is quite common in this group of young people, driven by frustration, and anxiety, particularly sensory overload. And then compounded by the fact the child may have difficulty recognising their own emotions. So they’re often described as going from zero to 10 in their emotions within a few seconds. And they find it really difficult to recognise sooner how they’re feeling. And also their belief that other people can read their mind so that other people pick up how they’re feeling when they’re not actually verbalising that.

So it’s important, particularly, to think about this, in anticipation of transitions. So changing schools, for example, is a really…can be a really stressful time, for these children. So it’s important to put in extra support thinking about the child’s environment, and prepare for these things. Sometimes, obviously, these children do need specialist assessments, because their challenging behaviours are extreme. And we would look at a functional assessment and look, in detail, of the triggers, patterns of behaviour, consequences, what the reinforcing factors might be, and then, sometimes, move on from that to a psychologically based intervention to reduce the challenging behaviour, and reinforce alternative positive behaviours.

So that might be with support from a specialist parenting programme. Now, antipsychotic medication, generally, I would avoid using. But there are a few children where psychosocial interventions aren’t effective or where the behaviours are so severe, that we might need to consider it. My concern is that these children, I think, can easily end up starting antipsychotic medication very young, and then the dose builds up and the side effects increase, and you might get a child with, you know, additional problems, like obesity, on top of everything else they’re having to cope with.

 

So I’m very mindful to try and use these only if all other measures have really been tried, use a low dose, and for a short time. Monitoring needs to be by specialists. So we’re talking about a pediatrician, or a psychiatrist. And really important to monitor side effects regularly and, you know, only use really short term. So local guidelines would often suggest not to use these medications for more than four months without a trial off because of these risks of longer term side effects. So the majority of my work, currently, with children, and young people, with ASD, would be managing comorbidity.

As I said, I work in a generic CAMHS team and 50% of my caseload either already have a diagnosis or are going through the assessment for ASD. So I see the full range of comorbidity. And clinicians in my team need to be able to adapt therapies for ASD and I need to take the ASD into account when I’m thinking of prescribing medication. Young people with ASD might not always react in the same way to medication. So I would want to be starting at much lower doses, increasing the dose very slowly.

I, personally, have noticed an increase in the number of young people with ASD with comorbid eating disorders and gender identity disorders, which, I think, is quite interesting. Also, I would say that young people presenting to CAMHS, for the first time, in a crisis, high risk situations, suicidal behaviours, is not uncommon. Young people with ASD can get very easily overwhelmed, and find transitions very difficult. For these children there’s often a lot of anxiety because they might be, as I said, presenting with very risky behaviours in a school situation, or with their families.

And they might need multiagency support from education, and, sometimes, from social care.

So 70% of young people with ASD actually have a comorbid disorder. ADHD is common. It used to be that ASD and ADHD weren’t diagnosed together, but now they are quite frequently. Tics, anxiety, and mood disorders, self-interest, behaviour, eating disorders, anorexia, but, also, atypical eating disorders, sleep problems. Enuresis, and encoprecis, co-ordination problems, specific learning difficulties, or intellectual disabilities. And then medical conditions like 7% have epilepsy. In my experience, anxiety, and depression, are the commonest, and sleep problems are also very common.

So if a comorbid mental health problem is diagnosed it should actually be treated by CAMHS, following NICE guidelines, for that specific disorder, but adapting the treatment where necessary. So, for example, anxiety disorders can be treated, and depression can be treated, with cognitive behavioural therapy, if the child has sufficient language skills, and if it’s adjusted for autism. We do need to think, though, about the child’s difficulty in generalising to situations out of the clinic room. So we do find that a child can really grasp the concepts in the clinic room, but then they move out into the real world, a family situation, or a school situation, and they find it difficult to actually put it into practice.

 

So the parent can be really useful, or teacher, in supporting with that. SSRIs also have a role. I would use them in the treatment of anxiety, and depression, and following the NICE guidelines. So I wouldn’t be using as the first line treatment, but there is a role. The recommendation would be to be aware that these children may respond in an atypical way to medications.

 

So start at a lower dose, increase slowly, and monitor carefully. Sleep problems are very common, behavioural techniques would be the primary intervention. Medication such as melatonin can be used. It seems to me that there’s different protocols for this, in different areas of the country. In my practice, I do use melatonin but I use it quite rarely. I would want to be using behavioural techniques first, using sleep diaries, before thinking of melatonin, and, then, if I did use it, I’d be thinking of it as a short term measure.

So I’ve now listed some resources that I’ve found really helpful, you know, involving, sort of, the National Autistic Society, which has lots of information, but, also, things like the Curly Hair Project, they’re really useful resources for families, and it would be worth exploring them.

This talk is based on an article I wrote in 2015, and it’s available free to download from the internet. I’ve included all the references in that article. So my suggestion would be that if you want to look at any of the references, in more detail, then they’re all available there.

OK, well, thank you for listening to my talk, and I hope you found it helpful.

Discussion

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This was a very clear and informative lecture.

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