In this podcast series ‘Autism, a parents guide’ Dr. Ann Ozsivadjian discusses autism with freelance journalist Jo Carlowe.
Episode 5 looks at ‘Recognising mental health issues’, Ann discusses anxiety in autistic children and young people, why mental health issues often go untreated and if depression presents differently in autism.
We are delighted 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.
Other Podcasts in The Series
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.
Interviewer: Hello, I’m Jo Carlow, a freelance journalist with a specialism in psychology. Welcome to the latest installment of ‘Autism: A Parent’s Guide’ with Dr. Ann Ozsivadjian, Principal Clinical Psychologist at Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust. This podcast series focuses on the Autism Spectrum Disorder and is designed to help families and carers. It is produced by the mental health charity, The Association for Child and Adolescent Mental Health, ACAMH for short, in partnership with Clinical Partners. For more information about ACAMH visit www.acamh.org. The focus of today’s discussion centres around how to recognise mental health issues in children with ASD. We will be discussing autism and anxiety, why mental health issues often go untreated in those with ASD and if depression presents differently in those with ASD. Ann’s clinical and research interests include assessment and treatment of mental health difficulties in autism spectrum disorder. Ann welcome. Can you start by introducing yourself?
Dr. Ann Ozsivadjian: Yes. I’m a clinical psychologist specialising in autism and neurodevelopmental conditions and both before and after my clinical training I worked in specialist services for children and young people with new developmental conditions at both Guy’s and St Thomas’ Hospitals and The Maudsley Hospital both in London. I still do lots of work for the NHS, both in terms of training and teaching and also some clinical work as well. The teaching and training I do is often in collaboration with ACAMH.
Interviewer: Great, thank you. Autism and anxiety often seem to go hand in hand. Can you explain the difference but also the overlap between autism and anxiety?
Dr. Ann Ozsivadjian: Yes. So, autism is a social communication difficulty, of course, and anxiety disorders are a mental health difficulty. And autism is a developmental condition, arguably a lifelong condition, whereas anxiety is not by any means, it waxes and wanes and not everyone with autism has anxiety. Although many people do experience high levels of anxiety a lot of the time. Anxiety is a normal part of life, of course, but people with autism seem to experience much higher levels of anxiety for much more of the time than individuals without autism, but of course this doesn’t apply to everybody, which is one of the reasons why it’s really important to recognise that anxiety is in fact a separate and treatable condition and not just part of autism.
Typical markers for anxiety include symptoms of stress, such as an increased heart rate or sweating or agitated sort of behaviour. Other behavioural markers might include avoidance as well. And then they may be some anxiety related cognitions, such as anticipatory worry. So, for example, what’s going to happen tomorrow or indeed worry about what’s already happened. So, why did I say this to that person in that way, you know, sort of rumination about certain things which can cause anxiety about future interactions. So, the main differences between anxiety and autism and the general population include very specific worries around change in routine. And that does seem to be very particular to people with autism and also very high levels of social anxiety which are not necessarily driven by the typical fears, which are often called fears of negative evaluation. That means basically worrying about what people are going to think about you, that they’re going to think about you negatively, think you’re silly or whatever. But in autism, it can be those sorts of thoughts but it also can be much more about not knowing what to say in social situations, not knowing what other people are thinking, just general social confusion which can lead to anxiety.
And another difference in the way anxiety may present in people with autism maybe that they may show rather than tell people that they’re anxious. Myself and some colleagues were around some focus groups where we asked this question, which is how does anxiety present differently. We asked parents and that was a very common comment was that they don’t actually tell me that they’re anxious but I can tell. They show it through, for example, social withdrawal or aggressive behaviour or twitchy behaviour. And then some people are actually very good at hiding anxiety, for fear of standing out and this means that it can be very difficult to identify, especially at school. So it’s really not uncommon for schools to say, well we really don’t see anxiety at school, and then one needs to be thinking about why. Why it presents so differently in different settings.
Interviewer: What other mental health problems are typically associated with ASD?
Dr. Ann Ozsivadjian: So, much more attention now is being paid to depression and suicidal behaviours with a recognition that depression may occur at equally high rates of anxiety in fact. There is a very limited amount of evidence, but it’s all pointing to the same conclusion really and in my experience many people with autism become depressed through living with such high levels of anxiety, actually, so the two kind of can go hand in hand.
Interviewer: So, they feed into each other?
Dr. Ann Ozsivadjian: Absolutely. And it’s something about not necessary treating depression, but treating anxiety which can help lift the mood. Other sort of mental health difficulties that might include emotion regulation difficulties, so problems with anger management as well. And this can be very empowering affecting relationships, access to education, access to the workplace etc. So, it’s really important to address some of these difficulties. Obsessive Compulsive Disorder is quite common in people with autism and increasingly eating disorders are being recognised in people with autism as well. So again, these may present quite differently and there may be less of a focus on body shape or image and possibly more of a focus on obsessive calorie counting or maybe food sensitivities or food aversions, which become very rigid and extreme or maybe having a special interest in like healthy eating or something like that which just becomes quite extreme.
Interviewer: Ann, does depression present differently in children with ASD?
Dr. Ann Ozsivadjian: We have much less data available to us, actually, than we do in terms of anxiety but there is some thinking that autism may present differently, a bit like anxiety in that there may be an increase in aggression, withdrawal, a decrease in self behaviours, maybe an increase in stereotype behaviours. But also some studies have looked at some of the assumptions that were made.
So, for example, people thought maybe people with autism won’t experience so much of the more abstract aspects of depression such as a sense of worthlessness or guilt or that sort of thing. But one study looked at these things and people with autism on questionnaires actually endorsed those sorts of abstract ideas as much, if not more, than people without autism. So again, I think that really highlights how we just really need to not make assumptions and actually, you know, look at things by case by case basis when we’re doing a detailed formulation. So I think depression, actually, can present quite typically with, you know, feelings of low mood, feelings of hopelessness about oneself, the world, the future. In those sorts of aspects CBT can be quite helpful in terms of helping people modify unhelpful thinking styles. I think that’s really the only case when CBT is helpful though. If somebody is depressed for very good reasons because of circumstances then really we need to be helping them with those circumstances.
Interviewer: How can a parent or carer recognise mental health issues in their autistic child? I would imagine it’s sometimes hard to differentiate between mental distress that might need separate treatment and ASD symptoms.
Dr. Ann Ozsivadjian: I think that’s absolutely true, but I think parents are very expert and many parents that I’ve worked with have described how they realised in hindsight what look like naughty behaviour was in fact anxiety driven. So, and again, the diagnosis can be instrumental in changing people’s understanding, people’s perspective, not just parents but professionals around the child as well. And parents described how once they knew that it was easier to see why the child was acting in a certain way and then address the underlying reasons. Other ways to recognise mental health difficulties are if you see an increase in avoidance or an increase in, for example, unhelpful behaviours such as not engaging in self care as much as before or something like that. One parent described how their child shut themselves in the toilet all day long at school, you know, that’s a form of avoidance and escape in a sense from the things which are causing anxiety.
Anxiety can also be confused with ADHD, Attention, Deficit and Hyperactivity Disorder as well. So, for example, children who are pacing around, irritating other children, it may be because of anxiety not because of increased, well, you may see increased hyperactivity, but that may be driven by anxiety and it can be so difficult for young people to put their feelings into words and so many parents describe the detective process which is needed in order to understand. For example, what’s making them pace rather than just saying you’re driving me mad.
Interviewer: Right. Should the parent actually be asking the child what’s making you pace?
Dr. Ann Ozsivadjian: If they think their child is able to answer that question, then yes, but sometimes it’s important to do, like I say, the detective process. Sometimes, you know, professionally I will do with parents what’s called a functional assessment which is an ABC approach. So, when you see a change in behaviour, what was happening just before the behaviour, what’s happening in the environment, who was there, then describe the behaviour and then consequence how did it end, how did it resolve itself. I think parents are actually, as I say, really good at differentiating mental distress from autism. So, when we were running our focus groups asking parents about the presentation of anxiety and their children, all the way through we asked you’re definitely talking about anxiety here and not autism and parents are very very clear that they were and they were also very clear that the impact of anxiety is often much greater than the autism itself. They would say, you know, we can manage the autism but it’s the anxiety that’s really challenging and it makes life hard. But getting to the root causes of anxiety can be difficult because of the communication limitations. So, even very verbally able children with autism may have difficulty communicating their feelings and that may get even worse at times of heightened anxiety as well.
Interviewer: So, at what stage should a parent or carer be seeking additional support for their child to help treat mental health problems?
Dr. Ann Ozsivadjian: As early as possible really and I don’t think there’s much controversy here. So, generally speaking the less entrenched the problem is the easier it is to treat, not always. But I’ve worked also with some very seemingly entrenched intractable problems which have shifted with the right understanding and the right knowledge or in fact the right intervention, which, as I say, might not be therapy. It might be about changing the environment or changing something in the environment. So, for one young person I met who is on the verge of coming out of school, I remember that we when we looked at his timetable there was one particular lesson that was particularly difficult for him. The school agreed to drop that and actually in dropping that not only did he have that particular stressor removed but he also had a bit of spare time just to give him a bit of downtime in the timetable and that made all the difference for this particular person.
So, again, there’s a real need to balance here and supporting your child of their anxiety, but also supporting resilience as well. So, we don’t want to be adapting the environment so much so that a child doesn’t learn how to cope with anxiety at all ever. So, it’s a tricky balance, yeah, absolutely. And sometimes you do need to, if a child is really so unwell or in so much distress, you do need to take away all stresses, but gradually build them back in again.
Interviewer: Ann, I’m aware that despite a high prevalence of mental health problems in children and the young people with ASD these often do go untreated. So, how does one go about getting the necessary recognition and the right support. Let’s say you’ve done the detective work, you know there’s an issue. How do you get the support you need?
Dr. Ann Ozsivadjian: Unfortunately, this is an area which still needs a huge amount of work really. I think nationwide because so many parents are saying the same thing, which is it’s just incredibly difficult to access the right support. This is difficult enough to access mental health support but accessing the right mental health support is challenging and sometimes services will say, well it’s autism, we’re a mental health service and then if you go back to autism specialist services they say it’s a mental health problem. And sometimes that means that diagnostic overshadowing is taking place in that there’s an assumption that because someone has autism therefore they’re bound to be anxious and this is actually both in the NHS and private settings as well.
So, NHS Services may say we’re not commissioned to treat autism, private insurers may say it’s a condition related to autism. We don’t cover autism and I would say that this is so wrong because, you know, you wouldn’t say because you have autism I’m not going to treat your renal condition or your eyesight problem or what have you so research has demonstrated what we already knew, in fact, as clinicians, which is that anxiety is a separate treatable condition and it’s just not fair to deny people that treatment because they have autism.
Interviewer: So, how do you change attitudes amongst professionals and commissioners of services?
Dr. Ann Ozsivadjian: Yeah. Well we just keep bashing away in a sense, but, as I say, I provide a lot of teaching and training and, you know, most individual practitioners are well aware of that but it is something about lobbying, I suppose, at both the government level and also at a local level as well to make sure that young people with autism are getting the treatment which they need, when people have had the right treatment and, you know, this could be via CAMHS or by a specialist CAMHS, and, you know, they’ve all said what made the difference was having someone who really understood autism, which is very important.
Interviewer: Ann, given what we’ve covered, what are the key issues here for parents?
Dr. Ann Ozsivadjian: From talking to the parents that I’ve worked with over the years, many parents have said that sometimes your world may become about autism and some parents really talked about how you need to keep a little bit of you for you in a sense. One parent described just sitting in a car park reading a newspaper just to have some timeout and she said she always felt guilty about that. Whereas I would say, I think those sorts of things are really important. Other people describe switching off social media just so that they didn’t see what everybody else’s life was like, you know, it’s doing whatever you need to do really to look after yourself and it is really important to look after yourself as well.
There is something about thinking ahead but thinking ahead in a positive way. As I said in one of the other podcasts, it’s important not to make too many long term predictions or at least not too many negative ones because we really don’t know what trajectory somebody’s life is going to go in, what direction and again, I’m not saying parenting someone with autism is a bed of roses. It’s not that, but it is about getting the right support or, for example, getting education right as well. It can be life transforming so parents do need to be very proactive in terms of accessing the right support, in terms of helping your child understand and accept their condition and just about finding their place in the world really. All these things are really crucial to positive outcomes. You know, I’ve worked with parents who are told that your child probably will never speak or they’ll never have a job and actually sometimes children’s trajectories can really defy all predictions. So,it’s important not to make too many.
Interviewer: For those listening to this podcast, where can they go for more information or to find helpful resources on the issues that we’ve talked about today?
Dr. Ann Ozsivadjian: The National Autistic Society, Autistica, Autism Speaks, and ACAMH. They all have websites with lots and lots of useful information. Lots of signposting to local Services etc. Also about mental health and how it presents in autism and also in terms of support with anxiety, Professor Simonoff and myself and some other researchers developed an App. I think I mentioned it on one of the other podcasts as well called Molehill Mountain. That unlocks daily tips, CBT tips and techniques in terms of managing anxiety, which some people might find helpful.
Interviewer: And is that downloadable?
Dr. Ann Ozsivadjian: It is downloadable, freely downloadable. Yeah. Absolutely.
Interviewer: For other episodes in the series, Autism: A Parent’s Guide, please visit www.ACAMH.org and follow ACAMH on Twitter @acamh or search on your podcast provider. Once again, our thanks go to clinical partners for supporting this autism podcast series. With the UK’s largest network of senior mental health in autism professionals, clinical partners can help ensure your child is fast-tracked to the right diagnosis and optimise a treatment plan. For further information and advice for families and carers, search for Clinical Partners Autism or visit www.clinical-partners.co.uk.