In this podcast series ‘Autism, a parents guide’ Dr. Ann Ozsivadjian discusses autism with freelance journalist Jo Carlowe.
Episode 1 looks at ‘Identifying Autism – getting the right diagnosis’, and Ann looks at the types and behaviours in children that may get parents/carers to question if their child could be autistic, and what they can do to access the right diagnosis.
We are delighted to that this podcast series for parents is supported by the Autism Diagnostic Practice at Clinical Partners. Working nationwide with only the most experienced consultants, Clinical Partners ensures you get the best ASD diagnosis and help tailored specifically to your child, as fast as possible. Discover more.
Intro: This podcast is brought to you by The Association for Child and Adolescent Mental Health, ACAMH for short. You can find more podcasts and other resources on our website, www.ACAMH.org and follow us on social media by searching ACAMH.
Interviewer: Hello. Welcome to a special In Conversation podcast series for The Association for Child and Adolescent Mental Health, ACAMH, focusing on autism spectrum disorder. I’m Jo Carlowe, a freelance journalist with a specialism in psychology. Today, I’m interviewing Dr. Ann Ozsivadjian, independent clinical psychologist, researcher at King’s College London and honorary principal clinical psychologist at the Evelina London Children’s Hospital. Ann’s clinical and research interests include assessment and treatment of mental health difficulties in autism spectrum disorder. This podcast is supported by Clinical Partners. For more information on Clinical Partners, go to www.clinical-partners.co.uk. Today, we’re going to focus on identifying autism and getting the right diagnosis for your child. Ann, welcome.
Dr. Ann Ozsivadjian: Thank you.
Interviewer: Can you start by introducing yourself?
Dr. Ann Ozsivadjian: Yes. I’m a clinical psychologist, specialising in autism and neurodevelopmental conditions. For several years, both prior to and after my clinical training, I worked in specialist services for children and young people with neurodevelopmental conditions. Now, I’m mostly in independent practice, although I still do some work for the NHS, both clinically and also in terms of providing training, often in collaboration with ACAMH. I’m an active researcher and I do a lot of teaching and training as well.
Interviewer: Great. Thank you, Ann. What types of behaviours might lead a parent or carer to ask the question could my child be autistic?
Dr. Ann Ozsivadjian: This really depends on what stage of development people first start to have concerns and also, who’s raising the concern. So, in early years, key indicators might include a failure to respond to their name consistently or limited or absent eye contact or not smiling back when people smile at them, for example. Another common concern is a failure to develop communication skills. So, that could refer to delayed language development, which people tend to pick up on quite quickly, but it’s not just about whether or not people speak but also, how language is used. So for example, whether it’s used to express and understand social intent, whether it’s used to share interest. You know, things like look, look at that or whether it’s used to make social comments such as look at what I’ve done. You know, that sort of thing or what are you doing? Or whether language is used primarily to make requests to get needs met.
So, an absence of language or an absence of other methods of communication, such as pointing to things to share an interest, may raise concerns. Then also, there might be something slightly unusual about the way language is used, as well, which people may pick up on later on. Another key indicator in the very early years, might be an absence of shared attention. So, as I mentioned, if you say look, you’re directing somebody’s attention to something and that might be non-verbal as well. So, through pointing or through following somebody’s gaze, their line of attention.
Another indicator as well, might be a child engaging in quite repetitive behaviours, such as lining things up, for example, or playing with the same object in the same way, over and over again. So, in a sense, some of the early indicators that we see are driven by the same thing, in a way, which is an absence of social curiosity, social intent and this may be expressed in play or interactions, etcetera.
Another indicator which may not be specific to autism, but it might be markedly challenging behaviour, which is beyond what you might be expecting, typically in, say, the terrible twos or what have you. But it may be tantrums over the smallest thing, quite frequently and quite sustained. Longer than a period you might expect to see these sorts of behaviours. It might emerge later, that these were due to a sensory intolerances or a child being socially overwhelmed or to do with rigidity, but that these problems are manifesting at a stage when the child didn’t have the language to tell anyone that they weren’t coping.
Interviewer: How early in infancy might a parent start to be concerned?
Dr. Ann Ozsivadjian: I mean, I think this could be for any age from about a year two years. I think you’d have to be seeing quite marked differences at that stage of development. But I think by about two or three, those sorts of quite clear markers of autism might be emerging but in later years, for children who don’t demonstrate such marked differences at an early age, concerns might be raised when children start in a setting which involves interacting with peers. So, such as nursery or primary school.
So, one thing that might lead parents to ask could my child be autistic at that stage, might be concerns raised by other people. Sometimes, for example, children display aggressive behaviour when other children enter into their space or if they make too much noise or if they’re playing with a toy that they want to play with. Or when, generally, things aren’t happening according to their own agenda.
So, for example, nursery staff, if they ask somebody to stop playing and move on to something else, that may create some problems. Some children may not display challenging behaviour at all. They might appear quite withdrawn, perhaps because they have difficulty understanding what other people are thinking or feeling or what other people are intending, how to read other people’s behaviours. Or they may have difficulty simply expressing their own feelings or a fear of expressing their own feelings for fear of standing out. They may have difficulty making or keeping friends. They may prefer solitary activity. And those are all the sorts of things which might alert people, or at least nursery staff or teachers might think actually, just need to have a conversation with parents about this.
Other signs might be having very particular interests that are highly preoccupying. Maybe even coming across as a bit obsessional. For example, some people talk at people rather than with them about a particular interest and then, for some children who may have quite normal language development, in many senses, there may be aspects of the pragmatics or the use of language rather than the structure of the language, as it were. So, for example, very over literal interpretations of language, maybe unusual prosody such as a sing-song quality to their voice or unusual accent or something like that.
Then, inflexible thinking or behaviour may also be a key sign of autism, but that may not be apparent until later ages. Just one other thing to mention is that it’s really important to note that no one single behaviour in itself is an indicator of autism. So for example, many young children flap when they’re excited. Good eye contact doesn’t mean that someone can’t have autism, for example, and there’s some myths around as well, such as you know people with autism have no imagination. I mean, that’s simply not true, really but people may think that if someone is engaging in imaginative play, then well, they can’t be autistic.
But one actually really needs to look at the quality of the play. So for example, even if it appears to be imaginative or symbolic, it may have a repetitive nature to it. So, it’s really important for parents to feel confident that the professional that they were consulting with has conducted a thorough assessment.
Interviewer: So, what is the next step for a parent who believes their child might be on the autism spectrum?
Dr. Ann Ozsivadjian: A good starting point would be to do your own research via some reputable sources such as the National Autistic Society, the NHS has some very useful information pages. There’s also the ACAMH website as well, which has lots of useful information on it. You might want to chat to a trusted person, someone you might know who you might have some experience with special needs or the system. The next step, then would be to visit your GP who might then refer you to the appropriate local service. What this looks like can vary. Some people may see their community paediatrician, who will do quite a broad developmental assessment, asking about symptoms relating to a number of conditions. Maybe ASD or ADHD, mental health. Generally a screen to find out who’s worried and what they’re worried about.
Interviewer: Just taking a step back. I know parents are often told to wait and see how their child develops. At what point should they begin seeking a diagnosis?
Dr. Ann Ozsivadjian: So, a key question for any parent or indeed, any professional considering an autism diagnosis for a child, is to consider the level of impairment or concern. So, a diagnosis can be hugely beneficial. In many ways, inappropriate. So for example, in helping understanding their child’s behaviour, their child’s thinking, learning new management techniques, getting the right understanding and support in school, thinking about how to modify environments. But if it’s not the right diagnosis or not the right time, so for example, if a child’s presentation is changing rapidly or indeed, if it’s not delivered in the right way, it can be very difficult for parents to come to terms with. So, absolutely, if assessment findings are clear, then absolutely, a diagnosis needs to be made as early as possible. That’s really important.
But there’s a lot of emphasis on early diagnosis and in my view, anyway, if the results are quite borderline, and if somebody has come along recently in leaps and bounds in certain areas of development, then it might be better to watch and wait. Sometimes we use the term working diagnosis if we’re writing a report but this would need to be followed by a review when the child is a bit older and any subsequent assessments should take into account changes in development from the first assessment. I also think watch and wait should only be concluded after a thorough assessment. I don’t think it’s enough just to, after a brief meeting or something, say well, let’s just see how it goes. That’s not the right way to go.
Interviewer: So, if a parent is concerned, they shouldn’t watch and wait. They should approach their GP.
Dr. Ann Ozsivadjian: I think that’s absolutely right, yeah, and the professional should explain to parents very clearly why they’re suggesting watch and wait.
Interviewer: Who else would it be valuable to talk to? Should you approach the child’s nursery or school? And if so, what sorts of questions should you ask as a parent?
Dr. Ann Ozsivadjian: Absolutely. It’s definitely important to have a conversation with school or nursery. If indeed, they haven’t mentioned anything already. So, this could be an informal conversation with a teacher asking, for example, if they noticed anything different about your child’s development or learning style or social interaction. Whether they have any, just general concerns or this may be a more formal conversation via an appointment with the special needs coordinator, SENCO, for example. They may have similar concerns.
Equally though, they may not and sometimes children can present quite differently in different environments. So, it doesn’t mean that they’re invalidating your observations if they have a different view, but it’s important to have a conversation about what is it about different settings where your child is presenting quite differently? So for example, the demands of school can be quite different to the demands of home.
Equally, some children may respond really well to the structure and routine at school, but they may resist rules or demands at home. So, it’s really important to think through why those differences might be observed. Other questions to ask are about how your child interacts with their peers, how you think they’re coming on in terms of their learning, their understanding of instructions, that sort of thing. Also, about your child’s behaviour and how much they can conform to the general classroom proceedings.
Interviewer: What should parents expect during the assessment process? Can you talk through what generally happens?
Dr. Ann Ozsivadjian: So, developmental assessment with a paediatrician might be quite standard. They would be finding out what the current concerns are, who’s concerned, what the child’s level of functioning is across different areas of development, such as intellectual ability, self-care and adaptive skills, speech and language or motor skills. What happens next might be subject to more variation, which isn’t ideal, really and it really does depend on local resources. So, they might then be referred to a specialist team. Hopefully, on that team, there’ll be somebody who’s trained in the ADOS, which is one of the gold standard tools to do direct assessment with a child. It requires training to administer and score and most community teams will have a number of trained professionals. So, that might be something to expect.
You could also expect to be doing a developmental history with a professional. You might have a psychologist on the team who would do an intellectual assessment. However, due to a scarcity of psychologists, this is unfortunately, far from routine and it is important because one does need to know your child’s developmental level, in that respect, in order to think about how other aspects of their development are coming along. It’s like a benchmark, in a sense and it does mean that if you don’t measure intellectual function, you might miss areas of learning impairment. It’s really important to get a profile.
Speech and language therapy is a more widely available resource and children are more likely, really, to have a speech and language therapy assessment. And again, this is really essential as autism can have co-occurring language disorder, for example, or there may be just disparities within a child’s language profile which need identifying. So, sometimes a child can have superficially good, expressive language, but that may mask a significant difficulty with understanding language. Or there may be a slowness with processing, formulating verbal expressions. In other words, getting your words out, getting your sentences out. It really takes a speech and language therapist to look at why that might be.
An occupational therapy assessment might also be indicated, especially if children present with sensory or motor difficulties. Again, both these areas of impairment can be contributors to mental health difficulties.
Interviewer: Can you describe what sensory differences might be?
Dr. Ann Ozsivadjian: So that might include a difficulty recognising one’s own internal sensations, which is referred to as interoceptive difficulties and within that, you have alexithymic type difficulties, which are difficulties recognising feelings, such as anger, happiness, sadness, that sort of thing. Broader interoceptive difficulties would include difficulties recognising tiredness, hunger, a whole range of sensations. Other types of sensory differences might be sensory hypersensitivity or hyposensitivity to sensory stimuli in the environment. So for example, noise sensitivity. Again, a good occupational therapy will help parents think about strategies to support their children with those sensory needs.
Interviewer: And what else should parents expect during this assessment process?
Dr. Ann Ozsivadjian: So, the multidisciplinary team would probably also gather information from school. They might either call school or go and do a school visit and do their own independent observation. And this is a crucial part of the assessment, to give information about peer interactions and behaviour, as well.
The team would then ideally, put their heads together and formulate a presentation and present this to parents. Though in some teams, this would all happen in one day and if not, soon after but in practice, some assessments often happen in isolation and sequentially, rather than the same time. So, it may be that the process from initial interview to feedback and actually take several weeks. I think there is actually increased recognition towards comprehensive neurodevelopmental assessments rather than separate pathways for separate conditions. So, the document produced by the Embracing Complexity coalition of charities is highlighting that neurodevelopmental conditions rarely occur in isolation and a single assessment process tends to be more appropriate, more effective and much more acceptable to families, really, as well.
Interviewer: And who would be at that meeting, then, if it’s a single process? Are the parents called into an actual meeting and if so, who would…?
Dr. Ann Ozsivadjian: Yeah. The multidisciplinary team might consist of a paediatrician or psychiatrist, a clinical or educational psychologist, hopefully, a speech and language therapist and maybe an occupational therapist, as well. A team approach is ideal, especially for reaching consensus about complex formulations, but there may be times when a paediatrician may make the diagnostic call in isolation. For example, if autism is really very clear and actually, waiting for a full diagnostic assessment using a team would actually delay things unnecessarily. So, where possible, it’s preferable to conduct a full assessment using diagnostic interview and observational assessment. You shouldn’t really rely on any single tool, though to diagnose autism, such as the ADOS, for of example. So, it is really crucial for professionals to put heads together and combine clinical expertise with the relevant tools.
Interviewer: Just if parents are listening and they don’t know what the ADOS is, what is the ADOS?
Dr. Ann Ozsivadjian: Of course. The ADOS is the Autism Diagnostic Observation Schedule and it’s a play-based and conversation-based assessment ranging from toddler module right through to adulthood. One last thing, actually, I wanted to say was that in the assessment, it’s really crucial for professionals to fully appreciate where parents are at in the process. So, some parents may know something’s different but not quite what. For some parents, it may be other people who have raised concerns and they’re still thinking through what some of the difficulties are or differences are. Other parents may know exactly what they’re working with and they need professionals to be very direct and clear.
So, when I was preparing for this podcast, I was conversing with some parents I’m working with and have known for a long time. I’m very grateful for their time, by the way, and one parent said it’s really important to be kind to parents when delivering the diagnoses. As professionals, when we’re doing a number of assessments, sometimes it can be easy to forget the emotional impact, really. It’s really important to remember that, even if a parent knows what the diagnosis might be or is, it’s not quite the same as hearing it. So, I think the way the news is delivered is so important because it’s maybe a moment that parents remember for a very long time.
Interviewer: Sure. Is there anything the family can do to prepare for the assessment?
Dr. Ann Ozsivadjian: Yes, they’ll probably be asked lots of questions about early development. So the more information that you have at your fingertips, the better. Make lots of notes about early behaviours. Maybe things which you may have considered normal at the time but, on retrospect, might have been a little bit unusual. Bringing in any previous reports or information such as nursery or school reports can be incredibly helpful and some parents bring video-recorded material as well, to an assessment, which can be incredibly helpful, again because children can present so very differently in different settings.
Another thing that families do, which is very useful, is to bring questions with them that they may have, to the assessment and that’s not to say that you have to have questions. You might not and you may have questions that arise as a result of the assessment, but if you do have specific concerns, for example about feeding or sleeping difficulties or about transition to secondary or anything like that, it’s important to raise these, even if the team don’t have all the answers. Another thing to be prepared for the assessment might be psychologically because you may experience a range of emotions. You may experience relief, you may experience a sense of loss. You may experience a gradual realisation that the course of development may be different to what you’re expecting.
Interviewer: I want to find out about making a diagnosis a useful tool. How can parents turn a diagnosis into a deeper understanding in terms of the meaning and implications for their child?
Dr. Ann Ozsivadjian: This is a really good question. Autism is so much more than a set of tick boxes and I think sometimes, diagnostic criteria we have available to us can make it feel that way, but it is of course, an incredibly wide spectrum and what is relevant to one individual may not be at all relevant for another. One child may need a special needs schooling placement, for example, whereas another may manage perfectly well within a mainstream setting, if they have a trusted adult or safe place they can go to, for example. Some children may respond really well to routines and visual timetables. Other children may not need this at all. Therefore, a really good assessment will not just state, this child has autism but it will describe in detail, how they arrived at this conclusion.
It will also describe in more detail about processing styles, individual traits, language levels, emotional maturity, etcetera. So, really, it’s about describing an individual and then, when making recommendations, my preference now is to make a few carefully tailored recommendations. Increasingly now, in fact, I draw up recommendations after the assessment in conjunction with parents and teaching staff. That, I think, is how you make the diagnosis a useful tool.
Also, increasingly, we’re recognising that it’s not just the surface features of autism that cause impairment, such as a lack of eye contact, stimming behaviours. But also, we’re recognising that some of the underlying cognitive styles or physiological differences that can cause impairment may need a different management style. So again, it’s really important for a good assessment to detail some of these differences.
So for example, if someone has a black-and-white rigid thinking style combined with emotional dysregulation, you may see the outburst behaviours that last far beyond terrible twos, even a very intellectually able children. For example, I’ve worked with young people who were fantastic in therapy, really motivated to change but were simply too emotionally reactive for therapy to work alone. Therefore, medication was needed and in terms of the meaning and implications of an autism diagnosis, it is so important to consider the positives as well as the areas of difficulty in terms of outcome and the unique presentation of each individual.
So my colleagues and I, when we’re diagnosing autism, we tend to focus on the strengths of having a neurodiverse brain as well as some of the challenges. While I’m not in any way claiming that parenting someone with ASD or having ASD is a bed of roses, it’s also really important that everything’s in place to try and maximize the person’s strengths and potential. So, sometimes what’s considered an impairment is actually down to the environment or societal attitudes or cultural contexts and things like that. Neurodiversity really is everywhere, from people who are a little bit obsessional, maybe. We can see these traits in ourselves or someone has executive function difficulties. It’s really about recognising that it’s not just about inclusion, but it’s recognising that neurodiversity is society, in a sense. We all are neurodiverse individuals.
Interviewer: After receiving a diagnosis, how does a parent or carer turn this into the right support for their child?
Dr. Ann Ozsivadjian: So again, maybe talk to other parents or people with experience, use credible sources of information to guide your thinking. There’s also something called the Local Offer which is a central source of information and help about services in individual boroughs for children with special needs and various other disabilities. Also, thinking about whether your school might be able to access autism advisory services if indeed, they haven’t already. Post-diagnostic support can be highly variable and parents may need to be quite proactive in terms of accessing services. So, something that many parents have said to me was you think that diagnosis is going to unlock things but it just doesn’t and that can be quite disappointing. But you need a good assessment to know what you need.
Interviewer: In your experience, how might parents go about sharing the diagnosis with wider family members and what are the benefits of sharing this?
Dr. Ann Ozsivadjian: So, this can be a really important part of the process. Wider family, especially grandparents, they may feel more involved, more on board. It may open up conversations and lead to people thinking about how to support you and support your child. There are still many myths and stereotypes about autism and some people may feel that society over labels children so it can be really important to share what your understanding of autism is, how it was explained to you in the assessment. Maybe share bits of the report, if that’s helpful, as well, explaining some of the differences between your child and maybe their siblings or family friends. That it’s not just rudeness or shyness, that meltdowns might be caused by anxiety, sensory overload, not naughty behaviour. Sometimes, people bring family members to the appointment, actually and we always welcome that and again, the National Autistic Society has some really useful literature in terms of how to share diagnosis with family members and of course, the young person themselves.
Interviewer: What interventions can the family anticipate being offered following an ASD diagnosis?
Dr. Ann Ozsivadjian:So, I wish I could say that a diagnosis opens doors but as I mentioned, many parents have described that it doesn’t necessarily lead to services or input. So, it’s not necessarily about what you will be offered but more about knowing where to look for what’s available. So, as I mentioned, the Local Offer is a good place to start, as well, talk to your GP again, and there are courses such as the Early Bird parenting program designed by the NHS which is available nationally. It’s aimed at increasing your understanding of how autism affects your child, more confidence in using strategies to help interaction communication, general improvement in family life, is what Early Bird is aimed at. Speech and language therapy may be available to assist families in terms of thinking about communication strategies, both at home and at school. Clinical psychologists may be available to work on behavioural interventions or mental health and therapists of all backgrounds or outreach services may be available to go into schools and design school-based interventions or environmental modifications.
Interviewer: Ann, we’ve talked a lot about how to recognise the signs of autism and the diagnosis process. What would you say are the key takeaways for parents and carers?
Dr. Ann Ozsivadjian: I think one key message for parents and carers is to trust your instincts. A decision to seek a diagnosis needs to be a conversation between yourselves, professionals, family members, if you wish to involve them. It really should be a coming together of expertise. So, professionals with a knowledge about child development and neurodevelopmental conditions and yourself, as the expert on your child. Equally, many parents have said to me actually, I need the guidance. I need clarity and so, if that’s the case then say so, ask for the clarity. Also, you really need to be moving towards strengths focused assessments and treatment.
So, thinking about what your child can do, as well as upon identifying areas of difficulty rather than the deficits models, which don’t really say a lot about how your child. One of the things that I’ve learned as a professional is not to make too many predictions about the long-term future as well. I don’t necessarily think that that’s very helpful. I think it’s important to be realistic, especially in the short term, in terms of thinking about what education your child needs and that sort of thing. But I haven’t found it helpful to make long-term predictions or rather, families I’ve worked with haven’t found it helpful because outcomes can vary hugely. I think it’s important to remain positive.
Interviewer: Dr. Ann Ozsivadjian will be joining me again for another instalment on ASD next month in a podcast series supported by Clinical Partners. For more information on Clinical Partners, go to www.clinical-partners.co.uk. For more information on ACAMH, visit www.ACAMH.org or Twitter at ACAMH. ACAMH is spelt A-C-A-M-H.
Outro: This podcast was brought to you by The Association for Child and Adolescent Mental Health, ACAMH for short.
Principal Clinical Psychologist at Evelina London Children’s Hospital, Guy’s and Thomas’ NHS Foundation Trust
Ann trained in clinical psychology at Oxford and is now an honorary principal clinical psychologist at the Evelina London Children’s Hospital, honorary researcher at King’s College London and is also an independent practitioner. Ann worked in the Complex Paediatric Neurodevelopmental Disability Service at the Children’s Neurosciences Centre, Evelina London Children’s Hospital (Guy’s and St Thomas’ NHS Foundation Trust) for 16 years. Her clinical and research interests include the assessment and treatment of mental health difficulties in ASD, cognitive pathways to anxiety in ASD, and also working with girls and women on the autism spectrum.