Lived Experience: Autism

As healthcare professionals, there may be times when we encounter patients with Autism Spectrum Disorder (ASD). In these cases, healthcare professionals may have to adapt their approach to ensure that the patient is provided with the most effective and patient-centred care.

A defining characteristic of the paramedic profession is the ability to attend to any case and approach it with an open mind, a broad assessment, and an approach tailored to the needs of the specific patient. One type of patient benefitting from all of these characteristics is the patient with autism.  

Being a spectrum condition,  ASD is not defined by a specific set of signs and symptoms and is often described as a hidden condition. Accordingly, medical professionals must be aware of the common hallmarks of autism.

Clinical Features

Autism is a ‘hidden condition’, however, there are numerous traits common to people with autism that may guide healthcare professionals in their management. A few common clinical signs are detailed below:

Poor eye contact: People tend to lock eyes with others when interacting, but a person with autism may avoid eye contact. They may completely avoid looking directly at another person, or do so inconsistently or fleetingly. People with autism may feel overwhelmed, stressed, and anxious when having to make eye contact. Therefore, do not attempt to force this patient to make eye contact with you.

Stimming: i.e. unusual movements and behaviours, which may be used by the autistic person to help them regulate and calm themselves. Examples of this are hand flapping, twitching, jerking, and head nodding, but stimming can include many other behaviours. These may be the first signs you notice in the prehospital or acute setting, given the stressful period for the individual.

Echolalia: i.e. repeating words, sentences, phrases or babble. People with autism repeat noises and phrases that they hear, and may not be able to communicate effectively because they struggle to express their own thoughts. For example, someone with autism may only be able to repeat a question rather than answer it. In many cases, echolalia is an attempt to communicate, learn language, or practice language. It may be an attempt to buy some time to understand what has been said. A neurotypical person will take approximately four seconds to process what has been said and respond with an answer, but a person with autism may need ten seconds or longer. 

Heightened sensitivity or sensory aversion: Autism can cause a person’s senses to go into overdrive, especially when faced with bright or flashing lights and loud noises. Everyday sounds might be hard for them and they might cover their ears or wear headphones. A person may try to smell or touch everything, and certain smells and sensations can overwhelm. During our work in and outside of the hospital sensory stimuli can be difficult to control, but we can make adjustments, such as avoidance of sirens, reduce the volume of monitoring equipment and using quieter side rooms.

Stereotyped behaviors: a person with autism may get “stuck” on certain habits, interests, or behaviours.  For example, they may always want to hold the same object or spend a lot of time lining up and arranging objects in a specific order.  

‘Meltdowns’- “more than just a tantrum”: Meltdowns are reactions to feeling overwhelmed and are often seen as a result of sensory overstimulation. Tantrums can lead to meltdowns so it can be hard to tell the difference between the two outbursts. Meltdowns can be very difficult for the individual to recover from or control and so preventative strategies can be particularly effective.

Top tips and clinical considerations

Health care professionals (including paramedics) may unexpectedly encounter a person with autism, therefore recognising typical behaviorus  may help minimise risks to the person with autism, their caregivers, as well as the healthcare professional. You will be meeting them in environments in the community where it is very difficult to manage their psychological wellbeing.

You may learn the person has autism from dispatch, family members, or from the patient, but you may alternatively get no indication that the patient has autism until at the scene. You may need to modify your approach when managing children and elderly patients with autism.

Time: 
If the person is in a ‘meltdown’, allow sufficient time to allow the patient to de-escalate themselves from their episode. It may be better to let the person de-escalate themselves with those familiar to the patient and without numerous people present where possible.

Patience:
A neurotypical person can take approximately 4 seconds to respond after being asked as a question, but a patient with autism may need more time to allow for delayed responses, e.g. 10-15 seconds, to respond to questions. Explore other means of communication as well with the individual, such as using visual aids.

Communication

Speak in direct, short phrases, asking one question at a time. This will give the patient a better chance to understand and respond to your questions.  If you include too much detail in questions or are asking too much of the person, it will make it difficult to get a response or for them to answer the question you have asked. 

Avoid slang or expressions such as: “What’s up your sleeve?” or “Are you pulling my leg?”. People with autism may not understand the nuanced meanings of sarcasm or slang.

Personal Space: 

Make sure there is a safe distance between the patient and yourself, and be mindful that those with autism may prefer more personal space and direct communication about when you will be coming into their personal space, such as to examine them or transfer them.

Rapport: 

Try to build a rapport with the patient by talking calmly and softly and modelling the behaviour you would like the patient to display. Find out what they are interested in and try to engage them in that interest. 

Once you have established a connection you can use that connection to build trust, which can assist in the  assessment and treatment of the patient.

It’s a team game!

When treating someone with autism, remember that ‘it’s a team game’. Do not take it personally if the person prefers to engage with another individual instead of you. It could be that the person responds better to a male/female or younger/older individual. You might need someone outside of the crew to be part of the team. Your first stop for more information with regards to these patients are parents and caregivers. These are the people that know the patient intimately, know their behaviours, triggers, aversions and reactions.

Useful Technology

Autism is a spectrum disorder and at one end of the spectrum the patient could be non-verbal which can make communication difficult. This is where your iPad, mobile phone and technology is an asset and can also be part of the team. Consider the use of pictures, written phrases/commands, or computer images. My advice would be to use their own device if you can.

PECS {Picture Exchange Communication System}
allows people with little or no communication abilities to communicate using pictures. People using PECS are taught to communicate with another person by using a series of pictures and by doing so are able to engage in communication. Emojis on your phone/iPad may also be used. 

Take-home messages

If the individual is holding and appears to be fascinated with an inanimate object, such as a finger spinner or small soft toy, they may do this to produce a calming effect and provide comfort. If you stop the patient from having this item it may be destabilizing for them in an environment that is already stressful.

Individuals with autism can also often have other health conditions, such as epilepsy, and due to difficulties in communication other physical health problems can be overlooked. It is important to not have diagnostic overshadowing whilst evaluating a patient with autism.

It is important to evaluate for injury as some individuals with autism may not ask for help or express their pain in an obvious manner. They may manifest pain in other ways, such as emotionally and may just use non-verbal cues to indicate it. When handing over the care of a patient with autism to colleagues, ensure that as well as the medical and clinical information about the patient, you hand over information regarding the patient’s sensitivities, aversions and triggers if known. This can ensure that the patient can be placed in a suitable area in the hospital, for example a quiet room with the lights dimmed. There is often also a specialist inpatient team who can review individuals with autism and offer advice and support during their admission.

References

Websites-:

www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns

Autism Spectrum Australia (Aspect) 

www.sciencedirect.com/topics/agricultural-and-biological-sciences/stereotyped-behavior

www.autismspeaks.org/sensory-issues

www.sciencedaily.com/releases/2017/06/170615213252.htm

https://raisingchildren.net.au/autism/behaviour/common-concerns/stimming-asd

www.verywellhealth.com/why-does-my-child-with-autism-repeat-words-and-phrases-260144

Books and Publications:

The Loving Push, Authors Temple Grandlin & Debra Moore 

The Autism Discussion Page book series, Author Bill Nason 

Understanding Autism, Author Susan Dodd 

The Complete Guide to Asperger’s Syndrome, Author Tony Attwood 

Taking Charge of ADHD, Author Russel A Barkley 

ADHD 2.0, Author Edward M Hallowell 

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