Ellen Cummings discusses how to adapt your practice and patient communication to become autism-friendly.
Autism spectrum disorder is a neurodevelopmental disorder which affects how individuals communicate and relate to others, and how they process and react to stimuli in the world around them. Autism affects approximately 700,000 people in the UK, and each one of these people experiences different challenges. Whilst some autistic people need minimal support, others might require continuous help from a parent or carer – and it is important that dental practices are able to provide the right care for autistic patients wherever they are on the spectrum.
Symptoms of autism can include taking longer to understand information, getting anxious or upset about unfamiliar situations, finding bright lights or loud noises overwhelming, and difficulties communicating. These particular challenges can make dental practices very stressful environments for autistic patients: reception areas are often busy and full of strangers; surgeries are full of noisy drills, bright operating lights and reclining dental chairs; treatments can be complicated and painful; and the whole scenario is out of the norm of the patient’s daily routine. I spoke to Daniel Cadey, an autism access development manager at the National Autistic Society (NAS), about the steps dental practices can take to make the practice experience a more positive one for autistic patients.
Pre-visit communication
Focusing on the information that you provide to autistic patients before they visit your practice for treatment is paramount. People with autism often need extra time to process information, so having this information available on your practice website is a great way to give autistic patients the extra time they might need to prepare for their visit. This information could include images and descriptions of staff, times when the practice is usually less busy, and video tours of the different areas of the practice where the patient might have to go. It might also help to allow the patient to visit on a date before their appointment so that they can become more accustomed to their environment – this will also provide you with the opportunity to fully explain any procedures. Familiarity can be extremely important, so continuity of care and ensuring the patient sees the same dentist or hygienist for each appointment is key.
Before the patient visits it is important to ask them if they have any specific requirements. Each person with autism is different, and so each will have different triggers. By taking the time to communicate with them properly, you can personalise their patient journey in advance to make it as comfortable as possible.
Scheduling
Whilst not possible for all practices, implementing ‘quiet periods’ in your practice will be greatly beneficial for autistic patients. Daniel explains, “A lot of opticians now have specific early opening times for those who can become anxious with crowds. Dental appointments are similar to optician visits as they’re both outside of the norm and because the procedure could already be quite stressful. Having crowds or a busy waiting room could be something that would add to that stress. So, if you can, it’s good to offer that extra hour or so when there are going to be fewer people in the surgery.”
If appointments have to fall within the regular opening hours then offering the first slot of the day or straight after lunch can minimise the chance of disruption or delay and so minimise anxiety. In terms of timing, it may also help to book double appointments or to spread treatments over multiple visits so that you have ample time to explain procedures in detail.
In the waiting room
In addition to considering a ‘quiet period’ during the practice day, creating a ‘quiet space’ in the practice can help minimise environmental triggers. By enabling the autistic patient to sit in a calm, quiet space whilst they wait for their appointment you will reduce the risk of them becoming anxious at the presence of unfamiliar people and sounds. This also helps to streamline the patient journey by exposing the patient to as few unfamiliar people as possible. In most waiting rooms different people are constantly coming in and out and patients can be passed from person to person. Daniel comments, “During the patient journey you see lots of different people – reception staff, a dental nurse, then the dentist. Making a reasonable adaptation so that an autistic patient will meet as few people as possible can really help, and it adds to the familiarity, so they don’t feel like they’re being passed between different people. Seating autistic patients in a quiet area away from other patients will reduce the amount of unfamiliar people that enter their environment.”
Educating staff about autism is also key – if they can recognise the signs of an autistic patient becoming anxious then they will be able to help them, rather than leaving the situation to escalate. These signs can vary but in children they can include meltdowns, and in adults they can include physical and verbal tics – things that may be misconstrued as bad or odd behaviour by people who don’t fully understand autism. If possible, Daniel recommends having one staff member who is fully educated about autism and who can monitor the patient throughout their journey at the practice.
In the surgery
The dental surgery can be a stressful environment for any patient, but particularly so for someone with autism – so it is important to understand their needs and adjust accordingly. If you asked your patient about any specific requirements before they visited the practice then this will help you make reasonable adaptations to the surgery and to your style of practising.
Some autistic people don’t like being touched, and some become anxious at unfamiliar sounds, tastes and sensations. Of course, touching a patient during a dental examination is unavoidable, but if you give them plenty of warning and clearly explain exactly what you plan to do then this should help to alleviate some of the stress. Altering surgical lighting and noises from equipment is also usually impossible, so in these cases it is recommended that you provide visual or tangible distractions, such as videos or stress balls. Where possible, offer alternatives to strong rinses or chemicals which may be intense and unfamiliar to the autistic patient – the NAS suggests using a very mild mouthwash or none at all.
Non-routine appointments can entail more invasive, painful procedures which pose a host of potential complications. Unfamiliar sensations such as injections and drilling can be more intense for some autistic patients, and therefore more painful. Conversely, some autistic patients have very low sensitivity to pain or they may not be able communicate when they are experiencing pain. This means that practitioners need to be extra vigilant in these circumstances.
Communication
Verbal communication can be a struggle for some people with autism, so many patients will attend an appointment accompanied by a parent or guardian. The degree to which you might have to communicate with the patient’s carer depends on where the patient exists on the spectrum. Daniel explains, “It is on a case to case basis – some people will want to communicate, some won’t. If you have a carer there to support then some of the impetus is on them to be able to tell the dentist what is needed. There is no problem with asking if someone has understood after you have told them what is going to happen or what is required in the future. You can double down by confirming this in writing or via email.”
Gaining consent from patients who have difficulty communicating and understanding can also pose a problem. Daniel says, “What dentists need to bear in mind when obtaining consent from autistic patients is to ensure that the information they give to the patient is clear and understood as relating to the Accessible Information Standard. Some autistic people may lack the mental capacity to give consent, in which case they will need to check with their appointee, following Mental Capacity Act 2005 guidance.”
After the visit
Becoming autism-friendly doesn’t end once the patient has left the building – it is important to follow up with the patient or the carer to find out their views on the whole process. Daniel explains, “We’ve worked with several dentists and orthodontists, and the key is not only adapting your practice but then to be aware that different people are going to have different experiences. Encourage feedback, particularly from autistic people or parents of autistic children because they will give valuable feedback on how well you’re doing and give you some hints for easy wins. Every surgery is different, and some might operate in a way in which their patient base can really help make minor changes with the feedback that they give.”
Continuing to learn
If you need more guidance, the NAS has experience of supporting businesses across many different sectors, from football clubs to airports. It has information on its website about how autism can affect individuals and the organisation also offers online training. By understanding the dental experience from the perspective of an autistic patient the practice will be in a better place to adjust appropriately and give the highest level of care and quality of service to all. Autistic patients may need an approach that is different, but it shouldn’t be any less.
*Article originally published in the April 2020 issue of The Dentist.