A small bit of knowledge about Autistic Spectrum Condition (ASC) can make a huge difference in how an emergency situation evolves. ASC is also referred to as ASD – Autistic Spectrum Disorder – but there is a move away from using the term “disorder”, driven by autistic people themselves. Many see their autism as part of their character and identity, hence “autistic people” rather than “people with autism”, and prefer to think in terms of a condition rather than a disorder due to the negative connotations this carries.
Unlike the UK, Ireland does not have official clinical guidance for transporting those with ASC or communication difficulties to the ED. There are two ambulance services in Ireland: the Dublin Fire Brigade (DFB), who run 12 ambulances in the greater Dublin area, and the National Ambulance Service (NAS) who run the remainder of the ambulances in Dublin and the rest of the country. Neither has any formal training in the management of those with ASC. Although some personnel have knowledge of the intricacies of the condition this is mostly due to personal experience with friends or family members.
A call to a situation where the patient has ASC is usually a last resort. Family members don’t want to make the situation worse by calling in strangers and will have tried their best to de-escalate the situation themselves. If the call has been made, the situation has gone past their control and they are admitting they need help. The parents may feel they have failed their child and the attitude of the staff coming into the house can make a huge difference to all involved.
Sam is 15, he’s 5ft 10 and 20 stone. He trips going out the front door and twists his ankle. He starts screaming and tries to get up. He puts weight on his foot and it goes from under him, further aggravating the injury. Due to his size and his injury, he is unable to get up. His dad tries to help him but is unable to lift him. He is screaming very loudly and a crowd is gathering. His family call an ambulance which arrives after 15 minutes. You can hear his screams as you pull up. There is a large crowd gathered, watching and offering ‘helpful’ suggestions to his father who is sitting behind Sam gripping him very tightly. Sam is trying to headbutt his dad and writhing around in apparent agony. You can see his ankle is injured but you can’t get near enough to assess him without getting kicked. You have to shout loudly to make yourself heard and the crowd are enjoying the entertainment.
You feel you need a few more bodies here to help and escalate the call to a behavioural emergency scenario which warrants the police being called. Within a few minutes you have two police officers with you shouting at the dad, trying to get him to stop assaulting the boy. The dad tries to explain but can’t be heard over the noise Sam is making, which has somehow gotten louder. You, your colleague and the two police are standing over Sam trying to hold him down with the dad telling you to get away. The crowd are filming everything. Every time Sam kicks out, he injures his ankle more. The situation is completely out of control.
From a Different Perspective…..
Sam is 15, he’s 5ft 10 and 20 stone. He is autistic and non-verbal. He trips going out the front door and twists his ankle. He starts screaming and tries to get up. He puts weight on his foot and it goes from under him, further aggravating the injury. Due to his size and his injury, he is unable to get up. His dad tries to help him but is unable to lift him. He is screaming very loudly due to pain and frustration and a crowd is gathering. His family call an ambulance which arrives after 15 minutes. You can hear his screams as you pull up. There is a large crowd gathered, watching and offering ‘helpful’ suggestions to his father who is sitting behind Sam bear-hugging him very tightly. One of Sam’s coping mechanisms to deal with unusual situations is to headbutt whatever is around him, in this case the ground, so his dad is sitting behind him to try and stop this but also giving deep pressure to Sam which helps comfort him. You can see Sam’s ankle is injured and a quick survey of the situation shows you that Sam is aggravated by the noise in the crowd also.
You ask your partner to quietly move the crowd on and you slowly approach Sam and his dad but stay out of kicking distance. You introduce yourself to Sam and his dad in a calm, quiet voice and ask what you can do to help. By asking this way you are acknowledging that the parent knows this child the best. You may be asked to go into the house and get an object to help calm the child: a blanket, a tablet or a favourite toy. In this case Sam’s dad asks you to go in and get his sleeping bag which he immediately puts over Sam’s head. Sam continues to sob but immediately stops kicking out. You are able to chat with Sam’s visibly shaken dad about what happened, and you can look at Sam’s injured ankle. You say what you are going to do and Sam’s dad says it in words Sam may understand. Although he protests a bit, you are able to assess his ankle and determine he needs ED assessment as it may be broken.
You are able to splint his ankle and, between the 3 of you, help Sam onto the chair and get him into the ambulance. His father asks if you can dim the lights and he runs back into the house and grabs a few bits including a tablet which he gives to Sam who is now trying to undo the seat belts. Sam calms immediately and even lets you do some obs when he’s distracted although he thoroughly dislikes the BP monitor and rips the cuff off. You pre-alert the hospital to ask if they can find a quiet space for Sam to wait to be seen and give them chance to review Sam’s care pathway, if he has one.
If you have no knowledge of ASC you will approach this scenario as an ordinary call and walk into chaos. You will see the father essentially holding this child down for no reason and you will act accordingly and put the safety of the child first.
The Autistic Spectrum
People with ASC vary from having very mild symptoms and being able to manage very well to someone like Sam who is completely non-verbal and also has an intellectual disability. The autistic spectrum isn’t a linear thing, with “high functioning” at one end and “low functioning” at the other. Think of it as a pie, made up of variable-sized slices – the social communication difficulties slice may be quite big, whilst the slices for inflexible thinking and anxiety may be fairly small. The whole pie is different for every autistic person. “Slices” vary, depending on the source used, but commonly also include sensory issues, routine, repetitive movements and intense focus or interests.
Autistic Symptoms and Coping Mechanisms
One of the most common symptoms of ASC is a dislike of change in routine, leading to use of personal coping mechanisms which can be seen as self-harm: head-butting walls, picking at skin etc. In this case, Sam was trying to headbutt the ground which would have caused him more injuries than just his ankle. As with some with ASC, Sam does not understand the consequences of doing this so could hurt himself badly before stopping.
Some autistic people have sensory processing difficulties. This can mean that the body misinterprets certain sensations – light touch may be uncomfortable, deep pressure may be comforting, loud or sudden noise may be very distressing. This is why Sam’s dad had a very tight hold on his upper arms. Other coping mechanisms in those with ASC may include talking about one subject, loudly and constantly, perhaps to distract themselves from something distressing, or sometimes if they feel they are not being engaged with. Some may not understand you may be talking to someone else about something more important, the situation is scary to them and this is their way to cope. Further symptoms may include a dislike of loud noises, bright lights, strangers or crowds.
You will be seeing these patients on an already bad day. Something unexpected has happened which has put them out of their comfort zone already, but it has happened to the extent that someone else has been called to their side. This can often be in a noisy environment with lots of people trying to help. Their senses are overloaded and they will need to employ all their coping mechanisms to try and manage.
You will not always know immediately that a person has ASC. They may tell you if they are able, or a family member/carer may say. If you feel the person’s reactions are out of proportion given the situation, consider whether they may be autistic.
Tips to Remember
Unfortunately, parents are used to getting unsolicited advice about how to best manage their children and a large number of people feel the symptoms of ASC are just a child being naughty with poor parenting. Parents may appear defensive at first but asking how you can help may calm them as they realise you are there to help rather than criticise.
Speak quietly and don’t crowd the patient. Don’t touch them without asking. Ask what you can do to help: do they have a toy/blanket/comforter with them that you can get? Is there anything that usually helps to make them feel more comfortable? If they are in the ambulance, can you turn the lights down and travel without the siren?
First and foremost, go into every situation with an open mind and ask what you can do to help. Not everything is as it looks and by being aware of this you can turn chaos into, well, less chaos.