ANNETTE: My name’s Annette and I have a grandson named Aaron who’s autistic, who’s on the spectrum. And he became a DoCS case at the age of two.
MIC CAVAZZINI: You’re listening to Pomegranate, a podcast for physicians of the RACP.
ANNETTE: When he was young, Aaron and I did a lot of things together, but when he hit puberty the wheels fell off the bus. He became very aggressive towards me to the stage where I was being pushed over, couldn’t manage. He’s a big boy, a very tall boy. I became ill, I got cancer. I also had my dad at home, it was just too much. The wheels fell off the bus completely.
MIC CAVAZZINI: I’m Mic Cavazzini, and today we’ll hear about some of the challenges of caring for a child who has autism, and of managing them when they present to the emergency department in a severally distressed state.
ANNETTE: Yes, we’ve had a few episodes of Aaron coming into hospital—he had an obsession about putting things in his urethra, and ending in the bladder. And I knew when this happened I had to get him to kid’s hospital. I knew I had to get him to Dr Nunn. It was no good going to the local hospital because they couldn’t handle him, right. And it was that total desperation—it was just one trauma after another, and there’s been times where I’ve nearly lost Aaron and I thought if we didn’t turn it around, we would lose Aaron for sure.
MIC CAVAZZINI: While Aaron has reasonable language skills, it’s not easy to determine causes of medical distress in patients who are non-verbal. People living with autism have trouble making sense of social situations and even of their own emotional state, and their anxiety can be triggered by trivial changes to their daily routine. Psychiatrist Kenneth Nunn has been seeing Aaron for several years. I joined him at the Westmead Children’s Hospital in Sydney, along with Annette and Dr Meena Rattan.
KENNETH NUNN: With ritualistic behaviour it’s often about the need to keep things the same, and any variation from a routine leads to a catastrophic response. And many times it’s a repetitive theme—it may be the contact with a biological parent who they’re no longer in contact with, it can be associated with a disappointment, being bullied at school, being in a situation where there’s an impending change of placement. All of those normal changes that occur in everyone’s life become such a big threat, and these children are living with a sense of threat and a sense of anxiety. And that’s what I see as the challenge for parents is: how do you shepherd them through the daily changes, constantly giving a running commentary to the young person and creating a narrative of the day, so the young person can reassure themselves?
ANNETTE: Yeah, you get very good at doing social stories. The other thing that I used to do is change things in a controlled environment and just do it a little bit, just so that he got a feeling for some change.
But yes, catastrophic—if it was a big change, you knew that it was going to be a big issue. You would hope the school would be 365 days a year. You’d hate if your carer would change. A lot about different types of food, different textures he couldn’t cope with. I can remember I would panic at the lights, “It’s got to stay green, it’s got to stay green, it’s got to stay green.” And if it went red, it would be—scream, yell, carry on in the back seat. If we didn’t get into the right car spot, then that would probably be the end of the day. The anxiety just to get five kilometres.
MIC CAVAZZINI: Let’s bring in Meena now. Meena, can you introduce yourself and tell us how you make sense of these behaviours when a child like Aaron presents to emergency?
MEENA RATTAN: Yes, so my name is Meena Rattan and I have a special interest in neurodevelopmental and behavioural paediatrics. Currently I’m working as a consultant paediatrician in Campbelltown Hospital.
So in the emergency department you have to be a little bit proactive. If you are aware that the patient is coming, then you can plan a few things already in advance. Being aware of the case really helps: who is the treating physician, so you have an opportunity to get the plan from them, because they know the patient best. When they arrive, they sometimes have to wait for several hours, so depending on how distressed they are you try to bypass the different processes in emergency and get them to a safe, calm environment.
KENNETH NUNN: And I think the triage is an issue—the carer can become fatigued and frustrated at having to repeat a history over and over again, and sometimes even get to the point where you skip things because you think, “Look, I really just don’t want to go down that pathway.” Because when you take a history of what has gone wrong you’re taking a history for the child of their failures. We know it’s not so but from their point of view it’s a history of their failures. Whereas a lot of that can be done in a simple summary, a laminated two-page summary. There are very few complex histories that you can’t summarise to a degree that will help.
ANNETTE: I was just thinking, coming to the hospital or an ED somewhere else, they sometimes don’t believe what you tell them—until Dr Nunn did a summary for me, a medical summary. And the carers can take that in, they give it to the doctor, they read the signature and they see Children’s Hospital logo on the top.
All of a sudden everything changes, they suddenly think, “OK, this could be serious.” Because some of the stuff with Aaron is totally—wouldn’t happen. You know, people think, “Couldn’t possibly.”
MIC CAVAZZINI: Children living with autism often have sensory processing difficulties. The hyper-stimulating commotion of the ED is far from the ideal environment in which to calm them down.
KENNETH NUNN: If you think of what happens in many EDs, it’s a naturally chaotic environment. You’ve got people talking—everyone feels the need to talk to the child if they’re distressed and upset. And you’ve got large numbers of people called to restrain the child, and the child is absolutely terrified. So what we have to do is, we do try and lower the stimulus. We do try, if they come into an ED like ours, to have only one person speaking to them, get everything calm. Because our calmness and the lack of stimulation all help.
MEENA RATTAN: And they function very well to the visual timetable—what is going to happen. So in that, the steps have been broken down into different pictures. So you can identify that: “This is the child.” Say Aaron has come—“So this is Aaron; he is sitting in the emergency department; this is doctor; this is nurse.” And they kind of expect that this is going to follow this. And then you show them the picture of tablets, “This tablet will be brought in by the nurse and they are going to dispense it to you.” So, that actually makes it really helpful for them to understand what is going to be the process involved.
MIC CAVAZZINI: But I guess that sometimes you really do need the child’s cooperation in order to examine them or to get them to take something. Annette, what kind of things can you do to calm Aaron down when he’s really agitated?
ANNETTE: Yes, to de-escalate it’s changing the scene for Aaron. Distraction—I think that’s really important and it takes forever. You know that it’s going to take a long time. It’s like going to be his activity for the day. They leave him alone for a while, they plant that seed and he’ll come out after a while and say, “I’m ready now.” But if you would’ve said, “Get in the car now. You’ve got five minutes to get in the car”—it would not have worked. It would not have. It’s pushing the wrong button.
MEENA RATTAN: If you are anxious and you are scared, these children are very, very sensitive to the non-verbal cues which the physician or the nursing staff are displaying. So the tone of your voice, the eye contact, the reassuring touch—you know, you have to go through these things in a very professional and non-threatening way.
KENNETH NUNN: And one of the things that’s helpful is to point out good things and positive things about them. It might be something about their clothing, it might be some little feature. And people are often surprised when we’re talking with autistic kids in the middle of a crisis, that we’re focusing on some rather petty thing, and saying how good it is. And, of course, it’s fracturing the global catastrophe and creating a little moment of focus on something else that enables some de-escalation to occur.
So those are the first gears of de-escalation, but the background to all is a communication of respect. It has a calming effect. But we also need people to know that there are times when you can be the most skilled person on the planet and you cannot calm the young person, because the threat is a threat that they can’t identify and you can’t identify.
MIC CAVAZZINI: Severely distressed children can be impossible to examine, and even just taking a temperature or measuring blood pressure can increase their anxiety. Meena Rattan says there is some basic information you can glean even without needing to touch the child, and a number of conditions you can look for, that most commonly bring them to the emergency room.
MEENA RATTAN: You can get a lot of useful information just by observing them, without even trying to be intrusive and trying to do the proper physical examination; the way they are talking—so what is the pace, the tone of the voice. Of course in a non-verbal child, a corroborative history from the carer is very helpful, so you can ask them about any immediate event in form of trauma or any past history in term of constipation, or anything like that. Sometimes it could be just medication-related as well. If a new medication has been changed, or it has been increased in dose and the patient gets suddenly agitated. And the patients who were non-verbal and wheelchair bound they sometimes have undetected fractures because they are usually osteopenic, so their bones are already very weak. So just being aware these are the common things which we screen for.
KENNETH NUNN: And you’d be surprised how common dentition is an issue. Sometimes one of the things is to look at their teeth, just to check.
MEENA RATTAN: Yes that’s absolutely right, because with autistic children they have associated sensory things and sometimes, you know, brushing their teeth could be an issue in itself. So you have to be aware that dental caries or just a dental abscess could be a reason of them getting aggressive.
KENNETH NUNN: We’re actually looking at the way the person functions as a whole, because they have limited ways of understanding their own state. If you think about these kids as like a harp with three strings, then whatever the distress is, whatever the concern is, they only have a small number of ways of communicating it. For instance, they could have an ear infection. They might target their ear or they might—one of the children I had who was blind and mute, had a blocked ear, so his only source of communication other than touch was blocked. And so he became extremely aggressive. If you’re being hurt, you often want to hurt in order to register that something is wrong, but you’re not even sure what it is yourself. And with that boy we had to do everything through feeling.
Another boy lost control when he—from hitting his head he dislodged one of his retinas, so he became more distressed as he lost part of his vision. Or they might, you know, you could have a young boy with a torsion of the testis, a urinary tract infection. But once a physician is aware of the dozen or so things that they need to look for, they can do that relatively quickly. And we’ve put this together in a chapter in Cameron, the Emergency Handbook of Paediatric Medicine.
MIC CAVAZZINI: And again Meena, what about dolls or picture cards? Can you use these to help the kid point out the location of their pain or the intensity?
MEENA RATTAN: For pain assessment we do have objective assessment visual charts. So varying from showing a slight smile onto a picture in which the child is crying with tears. You can just ask them to point out how they are feeling. Again, depending on the developmental level of the child, giving an opportunity to draw, to write what they are feeling, to text message, to be on social media with the carer or with the parent. Because even for a non-verbal child, you try to ask the carer, “What is the way they communicate or they express their pain, their pleasure, their happiness?”
MIC CAVAZZINI: If the child doesn’t want to be touched at all, have you ever had to ask the parent or the carer to palpate the child, or something like that?
MEENA RATTAN: Yes, of course we do have this sort of help from the carers as well, although it is not ideal, but sometimes at least we are able to get the initial examination or work up out of the way. So maybe even just dispensing a medication. So if you have a Panadol in a syringe and you pass it to the carer to give it to them, this is as simple as that. So just to be aware that the carer is very crucial. It is crucial for any child you examine in general, but very, very important in this specific subgroup.
KENNETH NUNN: We try to link the thing that the child is distressed about to the reason we’re giving the medication. So, we’re not giving this because it’s an anti-inflammatory—“This will help the pain in your tummy.” Or, we’re giving this not because this is an anti-psychotic medication, but because, “This medicine helps people to be less upset.” And it then has a clear logic behind it which the young person can understand, and they’re much more likely to take it.
MIC CAVAZZINI: Sometimes patients with autism are just so distressed it seems nothing will calm them down enough for the consultation to proceed safely. If the patient is at risk of hurting themselves or others, Ken Nunn says the next step is to try and convince them to take sedative medications.
KENNETH NUNN: Physiological arousal we can normally have a chance of talking that down, but once you see that that arousal has flowed over into their motor system, you really have to help them and then you’ve got to see, “Are they still cooperating enough so that they’ll take medicine?” But if we think that there’s a danger to themselves, a danger to others—you know, they’re running around out of control—all of those represent heightened risk. We have to take all that very seriously, and then we mobilise a rapid, professional, dignified involuntary sedation. And that has to be done calmly, with all the rigour of a cardiac arrest in which one person’s in charge, one person’s talking to the patient and there isn’t a babble of voices pounding away at this child who is overstimulated and has never had so much tactile stimulation for quite some time.
MIC CAVAZZINI: Annette, how does it feel to see this happening to your child?
ANNETTE: It wasn’t great, but it needed to happen. And Aaron was becoming a harm to himself, to me—and it could be to the rest of the kids in the ward. He was out of control completely. Working as a nurse, I’d seen mental health patients before, but when it’s your own it’s really hard. And, yes, they’ve got to be restrained and yes, security had to come to that area and it’s like, “My God, is he OK?” Everyone’s looking at you. But yeah I guess I was fearful, I was tired and they specialled Aaron and I went home overnight because I hadn’t left him. And yes, I needed to do that and someone needed to say, “You need to go. He’s safe. There’s someone here with him.”
MIC CAVAZZINI: Were you satisfied that every option had been exhausted?
ANNETTE: Yes, yes, and I knew that needed to happen for his welfare and for everyone else’s welfare. Yes, yes.
KENNETH NUNN: One of my patients turned the fire extinguisher upside down and sprayed all the other patients. And sometimes you can have an out of control teenager who’s 16 or 17, and 80 kilos, and a little baby who’s in with febrile convulsions in the same ED. So we have to take all that very seriously.
MEENA RATTAN: I was just adding that for the carers and for the parents, it is a very overwhelming experience as Annette pointed out—that you need the reassurance that the child is safe. But at the same time some carers, they feel guilty as well, that they have brought their child to this kind of situation.
ANNETTE: I think for the parent the debriefing is really, really important so that you can understand what happened. And it is, it is traumatic. But even the episodes at home where you get episodes of aggression—you need some lifeline, you need someone to be able to talk to, because you become really desperate. “Should I take him to hospital? Do we need more medication?” You need to talk it through with someone.
MIC CAVAZZINI: Ken, could you maybe summarise what drugs you would use if you did have to resort to sedation?
KENNETH NUNN: We use a very simple regime for the most part. If it’s a milder disorder and they need some assistance then we’ll generally use quetiapine. If quetiapine isn’t up to it and we feel there’s aggression involved we generally use olanzapine. They’re the voluntary drugs, and the involuntary we use are droperidol and midazolam. So there’s two voluntary, two involuntary and I think I should say that: as soon as you’ve got aggression, you want to make sure that stimulants and antidepressants are reduced. And that message is now much stronger in the paediatric community, but it still hasn’t spread more generally. When someone’s aggressive, you don’t want to be stimulating them.
MIC CAVAZZINI: And you’ve written about the fact that these children can tolerate surprisingly high doses for their body weight?
KENNETH NUNN: They do. Autistic children can tolerate sometimes amazing doses, bigger than adults because of the sheer level of their physiological hyperarousal. But as well as that—they’re not people that have got poor livers, or poor kidneys or poor hearts. They’re normally healthier than the people treating them, which is a bit of a problem because they’re definitely faster than the people treating them. But I think that the better the environment, the better the anticipation for them, the more controlled the stimulus, and the more the story of being cared for is made sense of to them, the less we have to use these medications.
MIC CAVAZZINI: Speaking of olanzapine, what are some of the psychiatric conditions that autistic patients might also present with?
KENNETH NUNN: So every condition that occurs in any other child can occur in autism or intellectual disability, only more so. So what we have are the same conditions but the threshold to get those conditions is a lot lower. And in Aaron’s case, there was a mood disorder as well which complicated it and was powerfully driving his behaviour. So it’s difficult enough to manage his initial condition, let alone a condition that comes on at the time of puberty.
MIC CAVAZZINI: Annette, if Aaron is really upset, how do you distinguish a psychotic episode from distress to real, physical pain?
ANNETTE: I guess you think about the onset and what’s caused it and the history around it. Yeah sometimes a psychotic episode might be to do with a behavioural issue, an anxiety issue. So, yes, I think you can tell the difference. I think I can tell the difference. I know Aaron very well.
MIC CAVAZZINI: While Aaron was an adolescent, there was some continuity of his medical care and homecare, but when he turned 18, Annette had to struggle to get guardianship status so she could continue to make the best decisions for his treatment. This abrupt transition can be deeply unsettling for families as the safety net of the paediatric system falls away, and there is less expertise available at dealing with neurodevelopmental conditions.
KENNETH NUNN: It’s a cliff.
KENNETH NUNN: It’s a cliff unless someone like Annette is taking the initiative and there’s some sort of medical oversight and backup—but it is a cliff, isn’t it, Annette, for most of the kids?
ANNETTE: I think moving into adulthood and changing, you know, psychiatrists and not having a paediatrician anymore, is frightening. And suddenly I’ve got to tap into the public system for Aaron because it’s got to be sustainable. I’m not going to be paying for Aaron’s healthcare forever, and I’m not going to be here forever, so there’s a lot of hurdles that we’ve got to through now to get into the public system.
KENNETH NUNN: I think that’s the point that the transition to adult care is one of our biggest concerns, because the continuity of care is not as great in the adult system as it is in the child system. The familiarity with working in collaboration with a carer is not as prominent in the adult system as it is in the child system, and I think the biggest issue for us is that physicians feel comfortable with neurodevelopmental disordered patients grown up.
MEENA RATTAN: This framework of transition needs to happen—there needs to be more interaction between adolescent services as well as the adult services so that that overlap process is more smooth. If they are high-functioning, our aim is that as much as possible that they’re capable of doing independent living; ways to manage their medications, you know, having reminders or supportive care from the person taking over which is usually a general practitioner you can just liaise with. And not everybody needs an adult psychiatrist.
KENNETH NUNN: And the care for all of these children is absolutely teachable and it’s not restricted to psychiatry. It’s nursing, it’s general medicine, it’s general paediatrics. Having Meena and others like her who have absorbed the necessary stuff from psychiatry to integrate it into their general medical care, is just a wonderful development that was not around 30 years ago, when we didn’t realise that there was a whole spectrum of care needed.
ANNETTE: And I think a really important thing is that you have that multidisciplinary team and you all work together, and we’re there for Aaron. And I think there is a light at the end of the tunnel. You’re going through it and you think, “I can’t do this anymore, I can’t do this anymore,” but there is a light at the end of the tunnel. And you know what? Aaron was put in a house with quite a lot of restriction around him and you know—the Perspex windows, everything was tied down. And they obviously thought Aaron was going to be quite violent in that house, and there was another young person who was similar to Aaron and I thought, “Oh God, how’s this going to go? What’s it going to be like?”
And you know what? They were just marvellous. They turned him around and I watched the way they handled Aaron and the other young man—it was respectful, it was just, yeah it was lovely. So now Aaron has turned 18, and three years down the track he might be able to live in—and I hope he will—a villa, with a carer there in the middle, his own little area. So, you know, that’s Aaron’s future.
MIC CAVAZZINI: Many thanks to Annette for sharing her deeply personal story, and also to Kenneth Nunn and Meenakshi Rattan for their contribution to this episode of Pomegranate. The views expressed are their own, and may not represent those of the Royal Australasian College of Physicians.
For resources mentioned in the podcast, visit the website at racp.edu.au/pomcast. Physicians in Sydney can contact Dr Rattan about regular workshops on management of behaviourally disturbed children. Physicians in New Zealand should look up the Health Passport system, which helps patients with complex needs carry their medical history with them. At our website you can also claim CPD credit for listening, and send us an email with your feedback. Please share the link with your colleagues, or join the conversation using the hashtag RACPpod.
I’m Mic Cavazzini, and I hope you’ve enjoyed the program.