Self-harm & Self-Injury – Episode. 9 ‘Autism a parents guide’

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In this podcast, we are joined by Dr. Ann Ozsivadjian, independent clinical psychologist and visiting senior lecturer at King’s College London, and Dr. Penny Williams, consultant speech and language therapist at the Evelina London Children’s Hospital.

Ann and Penny set the scene by explaining the difference between self-harm and self-injurious behaviours in the context of autistic children, and provide insight into how common self-harm is in autistic people, as well as what is currently understood about why autistic children and young people self-harm.

In addition, Ann and Penny discuss whether there are certain situations that can act as triggers, how parents can help to reduce these stressors, where parents can get help for an autistic child who is harming themselves, and what support can they expect to receive. We also hear about nonverbal strategies that can help when it comes to self-injurious behaviour.

Furthermore, Ann and Penny also talk to us about whether there is a link between self-harm and suicidal ideation, what parents should do if they are worried about this, and what advice they have for autistic older children and young people who may be listening to this podcast.

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.

Please subscribe and rate our podcast from your preferred streaming platform, including; SoundCloudiTunesSpotifyCastBoxDeezerGoogle Podcasts and Radio.com (not available in the EU).

Other Episodes in The Series

Episode 1 ‘Identifying Autism – getting the right diagnosis’ with Dr. Ann Ozsivadjian.

Episode 2 ‘Discovering Strengths – how to empower your autistic child’ with Dr. Ann Ozsivadjian and Dr. Marianna Murin.

Episode 3 ‘How autism presents differently in girls’ with Dr. Ann Ozsivadjian and Dr. Marianna Murin

Episode 4 ‘Coronavirus, and helping children with autism’ with Dr. Ann Ozsivadjian and Dr. Marianna Murin

Episode 5 ‘Recognising mental health issues’ with Dr. Ann Ozsivadjian

Episode 6 ‘Food Sensitivities and Proclivities’ with Dr. Vicki Ford

Episode 7 ‘Tailoring Support CBT and Mindfulness’

Episode 8 ‘Challenging Behaviour and Demand Avoidance’

Dr. Ann Ozsivadjian
Dr. Ann Ozsivadjian

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.

Dr. Penny Williams
Dr. Penny Williams

Penny works within a tertiary service for the assessment, diagnosis and management of children with neurodevelopmental disorders (affecting intellectual, motor, communication, behaviour and/or social development). Her clinical interests in ASD include challenging behaviour and the role of communication. Her research interests include exploring the parental role in speech & language interventions in young children. Nationally she co-developed and updated the NICE guideline on recognition, referral & diagnosis of ASD and is currently an expert adviser on autism for NICE. She contributed to the National Strategies Inclusion Development Programme for ASD and is a past chair of a regional specialist group in ASD for SLTs. (Bio and Image from learn.autism.org.uk)

Transcript

[00:00:30.750] – Jo Carlowe: Hello. Welcome to the latest instalment of the Special In Conversation podcast series for the Association for Child and Adolescent Mental Health, ACAMH, focusing on autism. Today we will focus on autistic children who harm themselves. The terms autistic spectrum disorder, ASD, and autism spectrum condition, ASC, are preferred by different people. In this talk we will use the term autism to encompass both. I’m Jo Carlowe, a freelance journalist with a specialism in psychology.

[00:01:01.290] Today I’m interviewing Dr. Ann Ozsivadjian, independent clinical psychologist and visiting senior lecturer at King’s College London, and Dr. Penny Williams, consultant speech and language therapist at the Evelina London Children’s Hospital. This podcast is supported by Clinical Partners. If you’re a fan of our In Conversation series, please subscribe on iTunes or your preferred streaming platform. Let us know how we did with a rating or review and do share with friends and colleagues. Ann and Penny, thanks for joining me for another podcast in this important series. Can you start with a brief introduction?

[00:01:34.650] – Dr. Ann Ozsivadjian: Hi there. Yes, I’m Ann Ozsivadjian, clinical psychologist specialising in neurodevelopmental conditions, and I’ve got a particular interest in mental health conditions in autism, and for 16 years I worked at the Evelina London Children’s Hospital, some of them with my colleague Penny here.

[00:01:49.830] – Dr. Penny Williams: Hi. Yes, I’m Penny. Speech and language therapist, as everyone said, at the Evelina, and I specialise in complex communication disorders and neurodevelopmental disorders, such as autism. My particular interests though are children who are minimally verbal and those who present with behaviour that challenges, including self-injury, working directly with parents to support change.

[00:02:10.890] – Jo Carlowe: I think of activities such as hand biting or head hitting. Can you explain the difference between self-harm and self-injurious behaviours in the context of autistic children?

[00:02:23.310] – Dr. Ann Ozsivadjian: Yes, you’re right, Jo. Those two terms are typically used in those ways and in many ways contributes to a dichotomous way of thinking about autism, so high and low functioning, which have become terms that the autistic community are increasingly rejecting. And in this podcast we’ve deliberately chosen to include behaviours that involve a young person causing harm to themselves in one way or another across the whole spectrum to highlight that point, that any self-harm or behaviour causing injury is a communication or a response to something, so either within the child or within the environment, wherever the young person may be on a verbal or intellectual spectrum.

[00:03:01.530] So self-injury often refers to behaviours such as head banging, hair pulling and biting, as mentioned, and sometimes a distinction has been made between self-injury and self-harm in that self-injurious behaviours often don’t necessarily have a wilful intent to cause harm to the self, unlike self-harm, which is sometimes seen as very much a wilful behaviour and choice. However, again, I’m not sure that this is a helpful distinction to make, as very few young people I’ve met want to be self-harming. So whether the behaviour involves a deliberate choice or not, it’s really important to look at the drivers of harmful behaviours, which often involve some sort of distress.

[00:03:40.410] In fact, in one study published in 2016, where only about half the sample were considered to have an intellectual disability, rates of self-injurious behaviour were documented across the spectrum in about a quarter of the sample. So while it was recognised that intellectual disability is likely to increase the prevalence of traditional self-injurious behaviours, they were still seen in comparable rates in those that have average range intellectual ability. So in other words, it’s not necessarily helpful to have this sort of dichotomous distinction between self-harm and self-injury, but rather to identify the drivers of the behaviour, and what skills an individual has to overcome the distress that they’re feeling in more adaptive ways.

[00:04:21.510] – Dr. Penny Williams: I completely agree. When we look at the evidence base, it just seems that the difference is due perhaps to tradition rather than any particular scientific explanation, and hence may be arbitrary. Though it is important that if parents and others wish to find out what the research says, to seek information that perhaps speaks to them and their child, it may still help to share what is currently meant by the two terms. So in individuals who have minimal speech and/or an intellectual disability, self-injurious behaviour is the term that’s traditionally used. This behaviour, as with self-harm, is any behaviour that results in someone causing physical harm to him or herself. Some of these have already been mentioned, such as hand biting and head butting. Another common behaviour we see in autism and intellectual disability is scratching.

[00:05:06.330] – Jo Carlowe: And today we’re going to talk about both self-harm in verbally able young people with mental health issues and self-injurious behaviours in minimally verbal children. Starting with self-harm, how common is this in autistic people?

[00:05:21.330] – Dr. Ann Ozsivadjian: Self-harm is actually very common in autism. As with any area of investigation, there’s often a wide range of prevalence statistics, but basically the studies that I’ve seen have suggested rates of about 40 to 50 percent and that’s with a lifetime prevalence, i.e., that’s happened at least once in someone’s life, in autistic people and across the intellectual spectrum. So this is far higher than in the general population. However, interestingly, one study looked at self-harm in people with and without autism, and they actually found that there was very little difference in terms of types of self-harm, age of onset or reason for self-harm.

[00:05:57.570] – Dr. Penny Williams: Estimates in children with intellectual disability vary depending on how the behaviour is described and the degree of cognitive impairment. For example, in autistic children with severe intellectual disability and with severe and persistent self-injury, current estimates suggest that we might expect to see this behaviour in 4-5 percent of such children. In other words, a special school for this particular group of children with, say, 100 pupils, four or five of them will be displaying frequent and difficult to manage self-injurious behaviour, which are in most need of services and support. This estimate, of course, doesn’t capture less severe behaviours or the occurrence in young people with less severe autism cognitive impairments.

[00:06:38.310] When we’re looking at a broader definition of self-injury without the severity indicator, a large study in America found that almost 30 percent of children with autism, autistic children, were reported to engage in self-injurious behaviour. Research, however, does not appear to be capturing transient episodes of self-injury, perhaps in response to pain, or the behaviours that perhaps occur in specific contexts only. These are just as important to identify and provide intervention for, so estimates can only be a guide, regardless of how common it is. Understanding it and treating it is vital if we are to minimise the harm to young people and the impact on their families.

[00:07:15.810] – Jo Carlowe: Is it always obvious that a child or young person is self-harming and if not, what behaviours should parents look out for?

[00:07:24.210] – Dr. Penny Williams: With self-injury the behaviours are often obvious. However, albeit rarely, they can be misunderstood. People can assume the behaviour is just a part of his or her autism and may not see it as harmful. For example, a child who every time his class had what they call circle time would sit in his spot and repeatedly bang his head against the cupboard which he sat next to, but staff thought it’s just what he does and because it wasn’t causing any obvious physical damage to his head, it wasn’t considered harmful. Some behaviours can also start out as light touch, and so not causing bruising or broken skin, or will be very rare, and people can perhaps be forgiven for missing early signs. However, the nature of self-injury in autism means that not understanding these behaviours and providing appropriate interventions early on can risk them escalating and persisting. As I said, this is not common. Parents do notice and are more likely to rate their self-injurious behaviour as more severe compared to teachers.

[00:08:19.110] – Dr. Ann Ozsivadjian: Yes, and in more intellectually able young people or verbally able young people, there is a risk that they will develop more sophisticated methods of keeping their behaviour covert, so perhaps, for example, due to feelings of shame or embarrassment or so as to not be prevented from doing the behaviour. So some behaviours might be obvious, such as visibly punching themselves, but other behaviours might be obvious after the event. So, for example, cuts to the arms or bald patches where hair should be, and some behaviours might not be obvious at all, such as cuts to places where people can’t see or which take place in private. So parents could look out for signs such as covering up more than usual or secretive behaviour or a tendency to isolate for long periods at times of distress.

[00:09:03.750] – Jo Carlowe: That’s very helpful. What is understood about why autistic children and young people self-harm?

[00:09:10.110] – Dr. Ann Ozsivadjian: This is a great question, which will lead us into how we can help those who self-harm. So what is incredibly important in trying to understand why anyone is self-harming is to start with a functional assessment in order to identify when it happens, in what context, who is around and what’s happening at the time, etcetera, etcetera. Otherwise, there might be a tendency to jump to conclusions, so it must be happening because of A or B or it must be suppressed, and people link straight into helping. Sometimes it might be a post on social media or something, which elicits a feeling and then that leads to self-harming behaviour. And with those for whom communication is a challenge this might be done through carers and observation, the functional assessment that is, but for those who are able, it might involve diary recording of their own feelings or thoughts or what circumstances their self-harm tends to occur in, etcetera, etcetera. So even for very verbally able individuals, diary recording might be quite challenging, though there are ways of supporting people with this.

[00:10:09.870] But a useful starting point for understanding why self-harm occurs is always to think of it as a communication rather than a behavioural choice. The communication might be I’m unhappy or I can’t stand this feeling or I need to punish myself. Self-harm might be an indicator for more enduring mental health problems such as anxiety or depression, and for some, it’s a coping mechanism, even if not necessarily a very helpful one. Low mood or negative affect is a common cause of self-harm, as is low self-esteem. And more and more the concept of emotion dysregulation is of interest to researchers, and emotion regulation is trans diagnostic, meaning that it’s a trait that might underlying a number of conditions, not just autism.

[00:10:50.790] And self-harm sometimes occurs in a response to a surge of emotions, which can feel overwhelming. So self-harm might be acting as a kind of pressure valve is what I read in one paper. So sometimes people feel that engaging in the behaviour releases that pressure. And it’s also really important to mention that self-harm can itself be or become rewarding. For example, in young people with hyposensitivity or alexithymia, for example, they may say, Well, at least I’m feeling something when I self-harm. Or for hypersensitivity it can counteract that intensity of the sensory overstimulation of extreme emotions. And we also know that the endorphins released can be pleasurable and hence reinforcing also.

[00:11:31.110] – Dr. Penny Williams: In children and young people who are minimally verbal, understanding why they are engaging in self-injurious behaviours is much more difficult to ascertain. They don’t have the language to tell you. And even for those with some words, their ability to understand themselves is limited by their autism and their learning disability. Instead, we rely on careful observations together with an understanding of what the research tells us. This can give us a working hypothesis, as you will, as to why this child is hurting themselves and provide an opportunity to intervene. Parents, carers, teachers who know the young person will already be desperately trying to work out why this child is hurting themselves. They’ll probably have many ideas that come to conclusions, such as it seems to come from nowhere, or he does it all the time in so many different contexts that we just don’t know, or it’s different at home than at school, so we can’t work it out. Sometimes those who are close to the child may have identified multiple different reasons, and that can make it hard to know where to start.

[00:12:29.910] Research tells us that the things that might increase the risk of an autistic person engaging in self-injury and it persisting, include experiencing anxiety, being impulsive, engaging in repetitive behaviours, and experiencing problems with sleep. If a child is in pain, this can also trigger self-injurious behaviour. These alone don’t always explain the behaviour. This means, as Ann’s already mentioned, we’ll still need to carefully observe the behaviour to understand what might precipitate or trigger it, and also unintentionally maintain it or keep it going. We call this a functional analysis of behaviour. The process of observing the behaviour over a good period of time is it allows us to see patterns about why it’s occurring and what might be maintaining it. It’s like the process that those close to the child are already engaging in; only it’s done systematically and includes interviews with those people. By gathering the evidence and testing our ideas the intervention we provide is completely individualised to that child and their family. This is at the core of what’s called positive behaviour support, the recommended holistic, person-centred approach to managing any behaviour that challenges.

[00:13:36.210] – Dr. Ann Ozsivadjian: And one interesting study that I read looked at different aspects of autism as risk factors for self-injury. So again, across the intellectual spectrum, so only a third of people in this study had an intellectual disability. They found that sensory atypicalities was the greatest predictor of harmful behaviours. And interesting here, sensory processing difficulties can have two functions. So one is that self-harm might be a sensory seeking behaviour, so, for example, extreme skin picking. Or it might be a response to a sensory aversion, so, for example, head banging in response to a noise that the person can’t stand or them resulting being removed from the situation.

[00:14:14.070] And other factors that were associated with self-harm included a need for sameness, so self-harm being a reaction to the anxiety caused by disruption to a routine, for example. And another factor is a tendency to [inaudible] behaviour and autism, as we know, doesn’t just occur in isolation but also in conjunction with other conditions often, co-occurring conditions or aspects of other conditions, so like ADHD, impulsivity and also compromised executive function. So difficulty with inhibition might be a feature which makes self-harm an easy go-to solution, as it were, to alleviating pain, and therefore it’s incumbent on us as professionals to identify an individual’s profile of features which makes them more likely to engage in harmful behaviours to themselves, but then also to help them problem solve and to think of alternatives.

[00:15:00.870] – Jo Carlowe: You’ve already touched on this a bit, but I want to look at the triggers. Are there certain situations that will act as triggers? And if so, how can parents help to reduce these stressors?

[00:15:12.510] – Dr. Ann Ozsivadjian: So this can be very, very tricky for parents. So self-harm or self-injury is very distressing behaviour for parents to observe. And sometimes it happens to be such a degree when a young person is actually at serious risk to themselves, for example, causing themselves brain damage or brain injury or, as with an eating disorder, at risk of starvation even. And again, situations that trigger self-harm will be unique to an individual. But common triggers that I’ve come across include seeing something on social media, receiving a distressing text, having a fight with a friend or partner, or sometimes having memories, which are just really emotionally overwhelming.

[00:15:48.090] – Dr. Penny Williams: So for the child or young person with limited verbal communication the first thing to consider is pain, particularly if the self-injurious behaviour is new or is suddenly escalated. Parents already know that their children struggles to tell them when they’re in pain and where it hurts, and finding that out isn’t easy. When working on a child’s functional communication, I often ask parents what they want their child to be able to communicate, and it’s often to be able to tell them that they’re in pain or ill, perhaps highlighting how difficult this area is. If pain is thought to be the reason, then parents could consider providing standard pain relief until they’re able to seek out medical attention. Just as important, though, is ensuring regular health check-ups, both with the doctor and the dentist to try and reduce the risk occurring.

[00:16:33.210] When a young person is minimally verbal the other reasons that can underline the behaviour is communication difficulties. This could be because they don’t understand what’s being said, and this may be on top of not understanding the context that they’re in. It might also be because they can’t express themselves. They can’t tell you they don’t understand, that they need your help, your attention, or that they want to escape, or that they want to protest. Some children who are severely impaired self-injury can sometimes be self-stimulatory, a way in which they occupy themselves. Unfortunately, some of these behaviours can start off with an identifiable cause, then risk becoming a part of a person’s repertoire of repetitive behaviour, due to their autism.

[00:17:11.910] So how can parents help? If you’ve identified that it’s serving a communication function, then your child will need to be taught an alternative method of communicating this need. This is called functional communication training, essentially replacing the atypical communicative act that is self-injurious behaviour with something safe and meaningful. If it is self-stimulatory, then looking at ways of developing your child’s ability to self-occupy and safely so. This is where the speech and language therapist and occupational therapist, respectively, can help.

[00:17:43.110] What should go without saying, though, is that this is good practise anyway, even if your child isn’t harming themselves, ensuring that they understand what’s going on around them with object or picture support, for example, and providing them with the ability to get their basic needs met through alternative ways of communicating is essential. Sometimes, however, even when these triggers have been reduced, anxiety, impulsivity and sleep problems can remain, and may warrant additional intervention, for example, using modified therapy where appropriate, or using medication approaches which can address features such as impulsivity, emotional dysregulation and rigidity.

[00:18:19.590] – Jo Carlowe: Ann and Penny, any other ideas about how parents can support a child who is intentionally damaging or injuring themselves?

[00:18:27.390] – Dr. Ann Ozsivadjian: The one really important thing that parents could not do is to get very emotional in response to the self-harm. Easier said than done, I know.

[00:18:35.250] – Jo Carlowe: Sure.

[00:18:35.250] – Dr. Ann Ozsivadjian: So often this can serve to increase feelings of shame or self-loathing, which the individual may already be struggling with, and be counterproductive. So the single most useful thing parents can do is talk to their child in as non-judgmental and calm way as possible. So make it clear that you want to support, not chastise your child. It may also be important, if possible, to subtly maintain a slightly higher level of supervision than you do normally, and also, of course, remove access to any items that a young person might use to harm themselves. Although people can be incredibly resourceful about how they access items, so it’s really important for parents not to feel terrible if a young person does get hold of something. And sometimes young people may find it too difficult to talk to a parent. There might be a trusted adult that they can open up to, such as another family member or someone at school, and that would be really more facilitating dialogues to ensure that your child is talking to someone.

[00:19:31.230] – Dr. Penny Williams: I should mention that for some very severe cases, there may be a need to use some form of physical restraint, such as a splint, but this should only ever be a temporary solution and where possible to be part of the therapeutic intervention that includes fading out its use. If they are required, professionals may wish to check that it is actually in the best interest of your child. Otherwise, seek help, ensure regular health check-ups, including the dentist, work with school to ensure that communication and how your child can communicate are priorities for both home and school, but recognising that there may be differences in what they need to communicate in both settings. Also, please don’t neglect your own wellbeing. The impact on families is significant, and not just sleep deprivation. Speaking to your GP if needed, and looking into respite opportunities, even if it’s just within your own family. Taking a break and putting yourself first occasionally can give you the strength to keep going.

[00:20:28.050] – Jo Carlowe: Sounds really important. I’m wondering if an autistic child or young person finds talking hard or shies away from being asked questions, are there nonverbal strategies that can help when it comes to self-injurious behaviour?

[00:20:43.230] – Dr. Ann Ozsivadjian: Yes, certainly this can be a challenge, even when, or sometimes especially when, working with verbally able individuals. Sometimes this might be due to core communication difficulties or perhaps due to feelings of shame or embarrassment, or another thing which is increasingly gaining interest is alexithymia, which is difficulty recognising and labelling your own emotions. So, for example, how much were you feeling angry, sad, or whatever? That might be a really difficult question to answer for some people. So, as always, when working with young autistic people, mixing things up with visual supports for communication as well as verbal questioning can be useful.

[00:21:20.130] So, for example, some professionals are still delivering therapy via online platforms, which often have the facility to share a whiteboard or if in person it might be easier for individuals to express themselves through writing or drawing. And strategies such as social stories or comic strips can also be useful in thinking about facts and explanations, or understanding a sequence of events. Using a visual thermometer can be really helpful. A resource, which I use a lot, is something called the CAT‑Kit, which I’ve got electronically. It’s a really handy collection of feelings, words, or faces for those who prefer, and lots of ideas for different ways to use them. So, for example, constructing a timeline or there’s a visual thermometer to help people think about how much of something that they’re feeling.

[00:22:03.210] – Dr. Penny Williams: And just to add for those who might be minimally verbal and if they’re comfortably able to do so, a technique called Talking Mat may be worth trying. It’s a structured and visual way of using pictures, of helping people to express opinions. There is a website for more information and we’ve included that information.

[00:22:21.330] – Jo Carlowe: Great. Thank you. Where can parents go to get help for an autistic child who is harming themselves and what support can they expect to receive?

[00:22:30.030] – Dr. Ann Ozsivadjian: So it’s essential that a young person who is self-harming has a risk assessment by an appropriate qualified professional. If the behaviour is not yet entrenched, for example, if it’s just happened once or twice and the young person indicates that they regret having done it, there’s openness and a desire to stop, then it may be possible to manage this with a therapist, such as a counsellor or a clinical psychologist addressing the underlying feelings, who will have the appropriate training to know when to escalate intervention and also to adopt a multidisciplinary approach or refer on to specialist services.

[00:23:03.750] At the same time as monitoring risks, they’ll be able to work on prevention of self-harm behaviours, and that involves usually helping a young person recognise the triggers, recognise the pathways, possibly using something called chain analysis, which involves analysing the chain of sequence of thoughts, behaviours and feelings, and then helping the young person to think about alternatives when they recognise those triggers happening. But if the behaviour is more entrenched and escalating, a referral to CAMHS should absolutely be made, usually via a GP. Many people find CAMHS quite difficult to access or there are long waiting lists, but nevertheless, it’s really important to try because services vary a great deal regionally, and sometimes they’re a very good alternative to Tier 3 CAMHS, which CAMHS teams themselves may signpost to.

[00:23:50.790] In an emergency situation, parents should always contact their GP, and if out of hours, accident and emergency where there’ll be access to an on-duty psychiatrist.

[00:24:00.150] – Dr Penny Williams: Some areas have a CAMHS service, especially for children with intellectual disability, and who have specialist skills in managing any kind of behaviour that challenges. They’re also often multidisciplinary and increasingly have speech and language therapy involved. If you find out if your GP, local paediatrician or other professionals involved don’t know, then I’d probably suggest The Challenging Behaviour Foundation. They have a list of what’s available across the country and also have named champions for specific areas. That would be my go-to.

[00:24:29.970] – Jo Carlowe: This is a difficult question, but parents may worry that there is a link between self-harm and suicidal ideation. Is that the case and what should parents do if they are worried about this?

[00:24:43.110] – Dr. Ann Ozsivadjian: This is indeed a difficult question. And here it’s really important to have a balanced view between not minimising the risk, but also not alarming parents. As I said before, self-harm is actually very common, but this doesn’t mean that every person who self-harms will attempt suicide. There is a link, which can cause people to become very, very alarmed indeed when self-harming behaviour comes to light, and indeed self-harm is a strong risk factor for suicidal behaviour. But this doesn’t mean that all people who self-harm will go on to attempt suicide, but rather it means that of those who do attempt suicide, many will have a history of self-harm. Let’s not forget, though, that suicide has also become a leading cause of death in under 25s, and therefore it’s important to address the underlying feelings of unhappiness as early as possible.

[00:25:28.590] So people might have feelings that life is not worth living and they might engage in self-harm to manage emotional dysregulation, but the two might not necessarily be associated. However, as I said, self-harm is a risk for suicidal behaviours, and that’s why it’s really important to seek out professional support in good time, and therefore it’s very, very important as well to address the underlying distress. As mentioned already, think about what is this young person communicating either to other people or to themselves. How can we alleviate their distress and give them better tools to manage their emotions? Do they need a break from social media or at least change the way they use it? Do they need a specialist school setting because they’re not coping? Do they need a psychiatric consultation because the emotional dysregulation warrants medical intervention? So these are all things that we need to consider.

[00:26:18.930] – Jo Carlowe: Do you have any advice for autistic older children and young people who may be listening to this podcast? If the urge to self-harm arises, what might they do to alleviate this?

[00:26:30.930] – Dr. Ann Ozsivadjian: I think the main thing that I would say is talk to someone, so either a trusted adult at home or school or a trusted friend. But don’t think that you’re alone and you’ve got nowhere to go. Or maybe call one of the advice helplines that we detail below. Another thing that we would consider is for young people to consider their uses of social media. So cyberbullying we know can be a huge problem and leads to feelings of low mood. And it’s also a risk factors for self-harm, even though other aspects of social media, such as seeing people at parties, etcetera, that they may not have been invited to, can also be quite distressing and overwhelming.

[00:27:06.390] Secondly, avoiding unhelpful web materials such as how to self-harm. There has been a concern that levels of self-harm have risen because of the attention it’s received on social media, so I would avoid anything that appears to promote self-harm and only look at websites which help you manage your feelings and overcome the urge to self-harm. And thirdly, I’d recommend some useful literature in helping you recognise your feelings, recognising that overwhelming feelings will pass. There’s a nice phrase called ‘surf the urge’, which I’ve come across, which essentially means sitting with the uncomfortable feeling, but knowing that it will go away.

[00:27:41.310] – Jo Carlowe: Where else can listeners go for more information or to find helpful resources on the issues we’ve talked about today?

[00:27:47.910] – Dr Ann Ozsivadjian: We’ve made some suggestions, which will be at the end of the transcript alongside this podcast. So there’s information on the NSPCC website, the Childline website and Penny, you’ve got some recommendations?

[00:27:59.310] – Dr.Penny Williams: Yes. As I mentioned, The Challenging Behaviour Foundation, Cerebra, The Positive Behavioural Support Academy, the British Institute of Learning Disabilities, and the Council for Disabled Children, National Autistic Society, and also the National Institute for Clinical Excellence. They have some clinical guidelines with some helpful recommendations and guidance.

[00:28:21.630] – Jo Carlowe: Excellent. Penny, that’s been so helpful. Finally, what are your takeaway messages for those listening to our conversation today?

[00:28:29.850] – Dr. Penny Williams: For the children who are minimally verbal, it may seem obvious, but to their parents, tell someone, tell a professional it’s happening and that you’re worried. Don’t wait. The younger the child and the sooner the intervention is provided, the better chance of a good outcome. For a child who can’t communicate in typical ways, this behaviour is telling you something. Don’t wait for the right professional. A speech and language therapist can help with communication, an occupational therapist with how your child occupies themselves. Mental health awareness in schools has improved greatly. Your SENCO or school counsellor may be valuable. Anxiety may play a huge part in this, and this might make you think that only CAMHS has the answer, but helping a child understand, communicate, and be meaningfully occupied may go a long way in reducing the anxiety. I guess don’t just tell someone, tell everybody, and encourage them to talk to each other. Working with a team, yourselves included, is what is needed. Lastly, we may have made this sound simplistic. We recognise it’s not, particularly if the behaviour has been going on for some time, but we hope it will help.

[00:29:31.890] – Jo Carlowe: Ann, have you got anything to add?

[00:29:33.270] – Dr. Ann Ozsivadjian: Yes, I think just for people across the spectrum, again, the key message is to talk to someone. And again, as I said, just be careful about what information you access for help. Obviously, it’s really good to know that you’re not alone, and online forums, etcetera, can be really helpful for that, but equally, any sort of information which reinforces the behaviour is not necessarily helpful. So really it’s about seeking help and thinking of how to address the underlying causes.

[00:29:57.510] – Jo Carlowe: Ann and Penny, thank you so much. It’s been hugely helpful and so informative. For more information on autism and the issues covered in today’s podcast, please visit www.acamh.org or Twitter @acamh. For more information on Clinical Partners, visit www.clinical-partners.co.uk. And let us know if you enjoyed the podcast with a rating or review, and do share with friends and colleagues.

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