Dentistry and autism
NHS Highland public dental service dentist Malcolm Hamilton provides some useful advice and information for practices treating autistic patients
In this article I hope to cover the development and evolution of a training programme covering dentistry and autism before moving onto the more practical aspects of dealing with autistic patients in a dental practice.
My own personal experience of delivering training in autism started more than a decade ago with some basic autism awareness raising and since then has evolved into a more specific dentistry and autism, delivered in a variety of settings and to various groups. I currently sit on NHS Highland’s Autism Strategy Group and participate in the Healthy Lives SubGroup. These groups are composed of a mixture of health, education and social care professionals and representatives of the autism community, either those with autism themselves or carers.
When considering dentistry and autism training there are various levels and facets to consider. Firstly, why is such specific training needed, to whom should such training be delivered, by whom, when and at what level?
Why is such specific training needed?
The current incident of autism diagnosis is increasing. There are various theories and explanations given for this rise, whether it be better diagnosis, earlier recognition or if there is an overall increase – it’s a multifaceted answer beyond the reach of this article. What is evident though is that the dental team is becoming more aware of the increasing numbers of autistic patients within all our practices. Autism is a spectrum condition; this means that the effects on an individual can vary from minimal to profound. There can be no affect on intellectual ability or a profound learning disability. There are various training packages available both nationally and locally (from the Open University and the National Autistic Society, to those run by local groups) but, in general, they deal with the condition itself only. If you are lucky, it will mention dentistry, but usually only briefly and then it will mention the difficulties involved.
What is required is training that highlights the needs and requirements of autistic patients and their carers within a dental setting. This training, while highlighting the main issues of autism, also needs to tackle those issues from a dental practice point of view.
To whom should training be delivered?
As part of NHS Highland’s Autism Strategy Group I recently surveyed local GPs on their experience of autism training. The results of this survey showed that, while most of those doctors had received some level of autism training, the reverse was true of their receptionists. This front-line element of dealing with autistic patients is vital. As such, we have ensured that when we are delivering training on any group of patients who may have additional needs that the training is delivered to the whole team, both clinical and administrator.
Those on the front desks are a vital element in reducing the stress and distress which can accompany dental visits by their communication skills and ability to adjust them accordingly. Within the dental setting it is imperative that all team members from front desk to surgery are included in any training.
While we train our dental teams on how to deal with an autistic patient, another aspect to be considered is providing training to local autism groups as to what they can expect and reasonably request in terms of visiting the dentist. Oral health advice leaflets can be distributed via drop-in centres and oral health messages incorporated into newsletters.
Who should deliver training?
During my own journey working with autism, I very quickly came to learn how political a community it can be. There are those who believe that all training on autism can only be successfully delivered by those with autism. Others are happy if there is consultation. We do, however, have to avoid the trap of producing a training programme and then sending it out for comments. This can leave people feeling uninvolved in the development of a programme, almost as if they are an afterthought.
There are numerous autistic societies throughout the country; some are national such as National Autistic Society while others will be more local. An example near myself is ARGH! (Autism Rights Group Highland!). A good relationship with both national and local groups can pay dividends in terms of disseminating oral health messages. We have training delivered by a dental team on its own, a dental team with autism diagnostician or a dental team with autism patient. Each has its own merits and advantages.
When should be training be delivered?
As with any training, this will depend upon need. Figures show the numbers of those with diagnosis is increasing. Whether that is due to better diagnosis, more diagnosticians or an absolute increase is still debated. As the Public Dental Service, we know that the number of referrals we are receiving for autistic patients is increasing, both adults and children. While some of these will be heading straight down a GA pathway due to their level of co-operation and ability to communicate, many others are for general dentistry.
As such, each practice should be aware of their own needs for training and arrange as frequently as they see fit. Ideally, new staff should be given training as soon as they start. Refresher training will depend upon your need – paradoxically it may be that if you do not deal with autistic patients often, you will require refresher training more frequently as, with so many things learned on courses, if you don’t use it you lose it.
At what level should training be delivered?
There are two aspects to training in dentistry and autism, there is the general awareness-raising of autism and its associated traits and comorbidities, and then there are the elements specific to dentistry. All healthcare professionals should be aware of autism and how it may affect patients, but surprisingly few have ever been given any formal training in this. Attending any meeting on autism and health, it soon becomes apparent that the bulk of most agendas is actually about diagnosis services rather than interacting with all the other elements of healthcare.
With regard to the elements specific to dentistry, the exact level will depend upon your patient base. A community clinic, which is seeing more complex cases will require more in depth training than a GDP practice would. Such additional training may include work on consent, working under GA, violence and aggression training, including the use of clinical holding.
How should training be delivered?
Training is available from a variety of sources, and there are numerous online packages at various prices. These are mostly very general in nature and, if you are lucky, may mention dentistry in passing. The Scottish Government has recently been funding professionals through an Open University Understanding Autism module, but within it there is no mention of dentistry at all. However, for an overview of autism it is very useful. The best for dentistry, therefore, is a specific training session, which can be as short as an hour or as long as an entire day. They are, however, few and far between. The ideal is an in-practice session attended by all staff members, not just the clinical team but also the receptionists.
Accumulation of marginal gains
I shall now explore various hints, tips and strategies that can help when dealing with patients on the Autistic Spectrum and their carers. I shall highlight a number of areas where small changes can together combine to bring about a more successful outcome. The phrase “accumulation of marginal gains” came into popular culture during the 2012 Olympics as it was the mantra of the Team GB Cycling team. The philosophy is that there is unlikely to be any one major change which gives you a revolutionary step ahead, but by bettering performance in a multitude of minor areas it will give an overall improvement.
As such, we will explore the options where we can make such small changes in the hope that they can combine to give us, as a dental team, a better chance of managing and treating autistic patients.
On the basis that forewarned is forearmed, we include a specific autism question on our medical questionnaires. The question reads: “Are there any other details or conditions which it may be helpful for your dentist to know about but are not mentioned e.g. autism or Aspergers syndrome, physical or learning disabilities.” This gives patient and carers a chance to prewarn us of a diagnosis or even prediagnosis.
We operate a helpline system for patients which asks broader questions. They include: “Does the patient have any medical condition which you feel has a negative effect on their dental health” and “Do they have any condition which affects their ability to care for themselves or seek care for themselves”. These are two very crude questions but are specifically designed to capture autism so that those patients can be directed to an appropriate clinic.
Once we are aware of the fact that a patient has autism, we can then take measures to gain additional information to aid in our interactions with them.
Once it is known that a potential autistic patient will be attending for the first time, we send them a pre-visit questionnaire. We have two different versions, an adult and a child. They basically ask the same questions but with slightly different wording. The questions ask about various aspects that would make visits easier: sensitivities, best time of day for an appointment, any expected difficulties, with communication and anything else that might help us.
The questionnaire is a single side of A4 which can be easily answered in as little or as much detail as a patient or carer wishes. However, the information contained can be invaluable in ensuring that a visit goes smoothly.
As well as a questionnaire, we offer to send out a pre-visit pack to those attending for the first time. These can be especially useful to children. The contents of the pack can vary but essentially depend upon the ingenuity of the person assembling it. Our usual pack contains a pair of gloves, a mask, a disposable mirror, a cotton wool roll and a sticker. This has the value of being compact enough to fit within a standard envelope and thus keep postage costs down.
Appointment timing and length of appointments
Unsurprisingly, the timing of an appointment can have a significant impact on the success of an appointment. This can be due to the actual timing and how it fits into a patient’s normal daily routine, but also how that person copes with change at different times of the day. Some autistic patients will be better first thing in the morning, while others may be better at the end of the day. This information will only come from direct contact and questioning. As such, blind sending out of appointments may not result in a success.
The other issue around timings of appointments is the impact a full or semi-full waiting room may have upon an autistic patient, as well as the physical wait itself. Ideally, there should be no waiting as this can cause stress and distress to many on the spectrum. It may be better to schedule such patients right at the start or right at the end of a session when there is unlikely to be many in the waiting room.
If the end of the session is chosen, then care should be taken to ensure that appointments are running to time. We encourage those for whom waiting is an issue to contact us shortly before their appointment to ensure we running on schedule. We also allow patients to contact us to tell us they have arrived but are waiting in the car park until we are ready, thus eliminating any need for sitting in a waiting room at all.
We usually allow a slightly longer appointment time for autistic patients, not necessarily for the treatment itself but to allow time for the patient to become comfortable in unfamiliar surroundings and because often communication can take longer.
Minimal arousal environment
When treating autistic patients we try to have a minimal arousal environment. One of the main issues with autism is a hyper or hyposensitivity, and this can be to external or internal sensations. This means there can be unusual reactions to lights, noises, tastes or movements. Therefore, we can turn off overhead lights, especially if they are fluorescent tube lights as these can cause hypersensitivity due to flicker. We also turn off the radio and we can turn off the ringer on surgery phones and place a notice on the door to prevent interruptions.
With regard to taste, plain water may be appreciated as a mouth rinse rather than mint, orange or thymol. Movement and balance is an often overlooked aspect of autism but we can help by having the chair in a reclined position thus preventing the need to have the patient moving in the chair.
Social stories are a form of pictorial storyline often used in other fields such as education. I was, in fact, introduced to them by my wife, who is a teacher. They compromise of a series of pictures accompanied by short text. They can be photographs or cartoons and can be used to represent a variety of different topics from a general exam visit to a more specific treatment such as fissure sealants.
A simple example might be: “This is the dental clinic where I will go to have my teeth counted” with a picture of the building. “This is the room I will sit and wait until it is time for my teeth to be counted,” with a picture of the waiting room. “This is the chair I will sit in to have my teeth counted,” with a picture of the dental chair. And: “The dentist will wear gloves and use a mirror to count my teeth,” with a picture of gloves and a mirror (this ties into the pre-visit pack). “This is the dentist who count my teeth,” alongside a picture of the dentist and, finally: “After my teeth are counted I will get a sticker,” with pictures
The principle is very simple, positive language with repetition reinforced by pictures. With modern cameras, they are extremely easy to produce by any member of the team and can be used for many different patients not just autistic ones.
As a query on the pre-visit questionnaire, we ask about special interests. Often, autistic patients will have a favourite topic which they like to talk about or are interested in. If we know what this is then we can utilise it to our advantage with suitably themed rewards.
We had one such patient who liked lights, so we let them play with our dental light after an exam if they let us examine their teeth. Another required the procurement of a number of large elastic bands, but more often it is just suitable stickers or colouring sheets of favourite TV characters.
Distracters and comforters
Often, autistic patients will already be armed with their own objects for distracting or comforting them. This may be as simple as a set of headphones, either noise cancelling or playing music to more complex such as iPads or portable devices. It may also include favourite items such as toys, pieces of clothing, rope etc.
We should allow any patient who wishes to continue using any such objects – unless they directly interfere with treatment. Some autistic patients derive a degree of comfort during stressful periods from what is known as “stimming” – short for self-stimulation. This is basically any form of hand movement and may or may not involve an object of some sort. Therefore, it may be useful to have squeezy stress balls available that can be offered to those who might benefit from them.
We can help autistic patients by adjusting the way that we communicate and there are a number of simple strategies that can be of assistance.
Say the patient’s name first to get their attention. So it is: “John, please open your mouth” rather than: “Please open your mouth John.”
We may consider reducing our language, using only key words, such as: “Music off” rather than “Please turn off the music now.”
We want to say things in the order that they will occur, so it’s: “Glasses on, then sit on the chair, then teeth counting.” The word “then” is a good link word that is easily understood.
Giving clear choices will help understanding, so a question such as “Which sticker would you like?” becomes far easier when it is reduced to “Barbie or Scooby Doo?”
We should always try to give positive instructions rather than telling patients what not to do, so instead of: “Don’t run around the chair” it is preferable to say: “It’s time to sit in the chair.”
A concept that occurs frequently with an autistic patient is the importance of being told when something is over. For this, it can be useful to use the word “finished”.
If we use it consistently, this will help the patient understand the concept of time and help to keep them calm.
The above is a very brief summary of a large number of tactics that can be deployed to use when treating autistic patients. However, they are not always successful and, as such, we may have to refer the patient onwards for treatment under GA. This brings its own challenges but ultimately is often the only option for some patients.
But, by taking our time and adjusting how we prepare for our patients, how we change our environment and how we communicate we can have success and make visits
to the dentist a lot less stressful that it might otherwise have been.
I wish you all the success in future dealings with this group of patients.
There is unlikely to be one major change that gives you a revolutionary step ahead
- NES Learning Resource http://asd.nes.scot.nhs.uk/
- Knowledge Network http://www.knowledge.scot.nhs.uk/home/ learning-and-cpd/learning-spaces/autism-spectrum-disorder.aspx
- National Autistic Society advice for dentists http://www.autism.org.uk/professionals/ health-workers/dentists-info.aspx
- National Autistic Society – Going to the dentist https://www.autism.org.uk/advice-and-guidance/ topics/physical-health/going-to-the-dentist/dentists
- British Society for Pediatric Dentistry Advice (PDF)
About the author
Malcolm Hamilton works as a senior dental officer in NHS Highland’s Public Dental Service. He has worked there since 2009, prior to that he was a senior dental officer in NHS Orkney. He qualified from Dundee in 1989 and moved to Orkney after serving in HM Forces. He currently works in Sutherland and Easter Ross providing a range of dentistry to his patients there. He has a special interest in autism and in domiciliary dentistry.
Malcolm can be contacted by email: firstname.lastname@example.org
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