Public and political awareness of autism is high, so it’s a good time for pharmacy teams to think about whether they are taking steps to meet the needs of their customers who have the condition

For many years, when asked to describe autism, most people’s point of reference would have been the film Rain Man. Dustin Hoffman’s performance as Raymond Babbitt showed the daily struggles of someone with the condition, in particular the stress caused by sensory overload and lack of adherence to routines. Tom Cruise, as younger brother Charlie, was equally powerful, summing up the impatience and disdain people with autism too often have to face.

More recently, autism has once more been in the spotlight. Television programmes such as Channel 4’s investigative documentary Are You Autistic? and BBC One’s drama The A Word have raised the condition’s profile among the general public. Meanwhile, a three hour debate in Parliament during World Autism Awareness Week and updates to the English Government’s ‘Think Autism’ strategy and its equivalent north of the border, ‘The Scottish Strategy for Autism’, have brought the disorder to the attention of politicians in a way that hasn’t really been done before.

So what has this got to do with pharmacy? Quite simply, both documents make it clear that anyone working in a public-facing healthcare role needs to know about autism, in order that they can support people in a way that takes into account their specific needs. It’s about doing the opposite of what Charlie did to Raymond in Rain Man: it’s about being respectful towards people with autism – or autism spectrum disorder (ASD) as it is often called – and making their lives easier, more meaningful and more satisfying.

Perception and communication

So what exactly is autism? A broad description is that it is a developmental disorder affecting two important areas of a sufferer’s life: how they communicate with and relate to others, and how they perceive the world around them. It is a lifelong “spectrum” condition, which means that while all people with autism have certain difficulties in common, there are many different ways in which they are otherwise affected; some will also have learning disabilities, mental health issues or other illnesses. This means that the amount and type of support required varies hugely.

Marie Smith, an independent special needs teacher based in the West Midlands who specialises in autism, says: “It’s like getting off an aeroplane and discovering that you haven’t landed where you expected, and you have to cross the city to get to another airport to get home. Everything feels so overwhelming that you feel extremely stressed, become very rigid and latch onto anything familiar as a way of coping.”

Around one in every 100 people in the UK has autism. Adding families to this 700,000 means that autism is part of daily life for some 2.8 million people, according to the National Autistic Society (NAS). And everyday life can be a real challenge. Going to school or work, socialising with family and friends, a trip to the shops… all of these activities are fraught with unpredictability so can quickly become confusing and paralyse someone with autism.

Be aware of the difficulties

According to Marie, there are four main areas of difficulty:

• Social interaction is gruelling because of an inability to read how other people are feeling, as well as the nuances of their verbal and non-verbal communication. This makes it hard to form relationships 
• Communication can be a real issue, sometimes because the person with autism has little or no language, and is unable to use gestures or facial expressions to compensate
• Lack of flexibility, a fixation with routines and repetitive behaviours are ways in which people with autism cope with what they consider to be an ever-changing world. Some can handle variations if they are able to prepare for them in advance
• Sensory sensitivity can affect any of the five senses and cause anxiety, distress and discomfort, which in turn can manifest as withdrawal, angry outbursts or other challenging behaviours.

There are many ways in which pharmacy teams can help, not just those with autism but also parents and carers. Marie makes a suggestion: “Take a walk round the shop and think about all the things that might be a problem for someone with autism in terms of their sensory sensitivity. Are the lights bright? Is there background noise from electronics such as the computer and till? Are there any strong smells – for example, from someone’s coffee, lunch or body odour? All of these can cause a physical, and sometimes painful, reaction. Other things that might be an issue to someone with autism are not knowing who they are going to see when they walk in the door.”

The next step is to think about how these elements can be mitigated, Marie continues: “It could be as simple as highlighting any times when it is quieter and calmer in the pharmacy on a notice or website, or just mentioning it during a conversation. For example, a parent of a child with autism who needs to come in regularly to collect prescribed medication would be very grateful to know that it is likely to be less busy if they come in on a Wednesday between 2pm and 4pm, and a particular staff member that is aware of their circumstances will be available to help.”

Prescription collection and delivery services can also be a blessing, says Marie, as can making a note in the patient medication record that the same product needs to be dispensed every time as any switch would otherwise be very diffi cult to deal with. Consultation rooms – assuming they are clutter-free – can be used to provide respite from the assault on the senses the person is likely to be experiencing, she adds, but warns: “Be mindful that the concept of time may be one they haven’t got to grips with, meaning that a few minutes can feel like forever. One way in which this can be made more manageable is by saying you will be back by 3:15pm, or even when the big hand points to the three.”

One step further

There is a great opportunity to take it up a notch, says Daniel Cadey, autism access manager at the NAS. “Our Autism Friendly Awards encourages shops, businesses and all kinds of public places to evidence how they are making sure autistic people get the same service as everyone else. It doesn’t mean spending lots of money on alterations, or being an expert and being able to make a diagnosis, but instead is about making small changes and raising awareness.”

Daniel goes on to explain the five criteria against which the award is made: “The first is customer information. It needs to be clear, and that can mean before the person even enters the building. For example, if the pharmacy is tucked away in a corner of a supermarket, highlighting this on a website then having clear signage in the building can help build confidence. The second is staff awareness. This is really important for pharmacy team members, who often need to ask quite a lot of questions. Knowing that an autistic person needs more time to process, and being aware that their behaviour may appear a bit erratic or strange because of their condition but also due to the anxiety the situation is causing them, means they know to be patient and calm. A little more awareness can go a long way to helping a staff member understand and adapt to reasonable requests.

“The third criteria is the physical environment. This isn’t just lights, noise and clutter, but also the number of people, both other customers and staff members. Getting them away from all of that, ideally into the pharmacy’s consultation room with a single staff member who will be able to deal with their questions rather than referring them on to someone else, can really help relieve the pressure, as can being clear about the need to wait if that is the case. Forewarned is forearmed.

“Criteria number four is consulting with autistic people and organisations like NAS in order to provide customers with a route to feed back on their experiences and invite those with expertise to support your efforts to create a more autism-friendly space.

“The final criteria for the Award is promoting understanding among the public. Spread the message that not every disability is visible, and take part in our campaign ‘Too Much Information’,” Daniel concludes.

The initiative was launched two years ago after a poll carried out for the NAS revealed that while most people in the UK had heard of autism, many of those with the disorder and their families felt the need to change their behaviour in order to reduce the chance of intolerance from the public.

Marie concludes: “The best thing pharmacies can do is to learn about autism. It’s a very individual condition, so no one strategy works for everyone, but just being aware of it, watching for the signs that someone might have it, and asking questions about what might work best for the person to make their visit easier, can have a big impact.”

Be mindful that the concept of time may be one they haven’t got to grips with, meaning that a few minutes can feel like forever