Flying with Autism

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BILL READ FRAeS and JENNIFER READ look at the issues faced by autistic air travellers and what can be done to help them.

There has been an increase in mental health issues reported by disabled people 2017-2020. (2021 Family Resources Survey)

According to statistics published in the UK government 2021 Family Resources Survey, up to 7m people in the UK suffered from mobility issues. However, not close behind were 4.1m people who had mental health problems. In recent years there has been an increased focus on the needs of physically disabled transport users and improvements have been to transport infrastructure to make their journeys easier (such as ramps, lifts and provision of wheelchairs at airports). However, while many physically disabled passengers say that there is still much to be done to improve their transport experiences, it could be argued that their needs are better catered for those passengers who suffer from hidden disabilities.

This article will be focusing particularly on the challenges faced by travellers with autism, as well as the wider issues of the challenges faced by airline passengers with hidden disabilities and what can be done to assist them. In researching this article, I have had the assistance of my daughter Jennifer who is autistic and has the support of an emotional support dog.

Hidden disabilities

One of the main issues faced by hidden disability (also known as neurodivergent) travellers, says Jennifer, is that – at the risk of stating the obvious – their disabilities are hidden. While it should be obvious to onlookers that someone in a wheelchair is physically disabled and needs special treatment, the same cannot be said of someone with a hidden disability.

A hidden disability (also referred to as an invisible disability) refers not just to neurological conditions but also physical and mental conditions which aren’t immediately obvious to onlookers. Common hidden disabilities are dementia, autism, learning disabilities, anxiety issues, mental health impairments and hearing loss.

Autism explained

Autism is a condition which can affect how people experience the world. It can affect all five senses, including under and oversensitivity to noise, light and smells which would not normally be noticeable to neurotypical people. According to the British Medical Association, an estimated 700,000 people in the UK have a diagnosis of autism.

People with autism see the world differently. All autisic people are different but five things that the condition can cause are:

– Feeling (sometimes intense) anxiety about changes or unexpected events

– Being (in some cases extremely) under or over-sensitive to sound, smells, light, taste and touch – also referred to as sensory sensitivity

– Needing extra time to process information, such as questions or instructions

– Facing high levels of anxiety in social situations, such as finding it difficult to make eye contact

– Having difficulties communicating and interacting with others, such as being unable to speak during stressful situations

People with autism often find it difficult to filter out background information and are adversely affected by lights, noises, people and smells. Some environments can increase levels of anxiety and stress, such as unfamiliar places or people. Autistic people can find the following difficult: planning, organising, multitasking, sequencing, retaining information communicating details in an ordered and sequential manner and initiating tasks.

However, Jennifer explains, every autistic person is different, so that problems faced by one individual may not be the same as those experienced by another. In her case, she tells me, her five senses are dialled up to much higher levels. This means that what some people consider are acceptable levels of noise are deafening to many autistic people. The same phenomenon also occurs for other senses, such as touch and taste. A fear of overcrowding is also a problem.

Another factor is that of order. Autistic people, says Jennifer, like to know what to expect in advance. Unexpected events or sudden changes of plan are bad news. Autistic travellers also like to feel secure but at the same time also do not like being confined.

If the levels of stress and anxiety become too much, it can impact on the individual’s ability to communicate effectively. One issue experienced by autistic people subjected to too much stress is to experience a ‘melt down’ in which they may become non-verbal and are unable to communicate or receive communications. All forms of social communication become difficult and eye contact can be painful and confusing. In some cases, people may become aggressive due to feeling afraid for their safety.

A third issue is that of non-communication. Some autistics are permanently non verbal but, for some, this state does not usually last for long but is a problem in situations where other people do not understand why an autistic person is not responding and think they are being rude and shout louder – which only exacerbates the situation.

Assistant dogs

While everyone is probably familiar with how guide dogs can assist blind people, what may be less well known is the work of other assistance dogs which are trained to support disabled people and people with medical conditions. Examples include medical alert dogs, hearing dogs and autism dogs. According to the organisation Assistant Dogs UK, over 7,000 people in the UK rely on a trained assistance dog from one of ADUK’s members, enjoying the additional emotional benefits and greater independence that such dogs bring.

A fully-trained autism assistance dog can help change behaviour by:

– Introducing routines

– Reducing bolting behaviour

– Interrupting repetitive behaviour

– Helping cope with unfamiliar surroundings.

Many people who suffer from a variety of illnesses, including mild to severe depression, phobias, PTSD, anxiety and panic attacks have found that companionship of an emotional support animal alleviates symptoms.

Service dogs are trained to perform tasks for the benefit of an individual with a disability – including physical, sensory, psychiatric, intellectual or other mental disabilities. These can include:

– Searching an area/room before the individual enters (for a person with PTSD).

– Assisting an individual during a seizure

– Help individuals who are blind or have low vision.

– Help to pull a wheelchair.

Regulations

So, how does this relate to air travel? According to a study conducted by the UK Civil Aviation Authority (CAA), around 30% of passengers with reduced mobility (PRMs) have a non-physical disability which makes air travel difficult. In addition, as many as 7% of potential passengers could be avoiding air travel because of a hidden disability.

The CAA includes in its definition of hidden disabilities dementia, autism, learning disabilities, anxiety issues, mental health conditions, visual impairments and hearing loss, together with non-visible physical disabilities such as epilepsy, respiratory conditions and chronic pain.

The CAA met with a number of organisations representing people with hidden disabilities, including the National Autistic Society, the Alzheimer’s Society, Epilepsy Action, Mental Health Working Group, RNIB and Action for Hearing Loss with the aim of establishing the varied needs of people with hidden disabilities in terms of accessing air travel.

In November 2016 the CAA published guidance for airports on providing assistance to people with hidden disabilities (CAP14111) on providing assistance to people with hidden disabilities. This has since been supplemented with additional guidance for airlines flying from the UK and for flights to the UK on an EU- registered airline. Under the Regulations, an airline must not refuse travel on the grounds of disability or reduced mobility unless it must do so to meet applicable safety requirements.

 

The CAA guidance for airlines is based on the minimum compliance standards under Regulation EC1107/2006 (which applies both to the EU and to the UK) to provide assistance to people with hidden disabilities. The guidance sets out that airlines should:

– Have a clear and accessible pre-notification system in place allowing passengers to request special assistance at the point of booking

– Share information about a passenger’s assistance needs within their own organisation and with the airport and ground handling agents

– Ensure a passenger with a hidden disability is seated with a travelling companion at no extra cost

– Invest in quality training for staff so hidden disabilities can be identified and passengers assisted accordingly-Ensure passengers with hidden disabilities are looked after in the event of flight delays and cancellations.

 

Brisbane Airport non-verbal information lanyard. (Brisbane Airport)

The CAA has created requirements following the guidelines which it says are focused on providing practical benefit to passengers, airlines and airports. In 2017 the CAA conducted a review on the progress that UK airports had made to confirm with the regulations, the results of which were published in a report in 2018 (CAP 1629 Supporting people with hidden disabilities at UK airports).

The CAA reports can be found on:

https://publicapps.caa.co.uk/docs/33/CAP1629%20HD%20-%20FINAL%2007JUN2018.pdf

https://publicapps.caa.co.uk/docs/33/CAP1603Assistingpeoplewithhiddendisabilities.pdf

The US also has regulations regarding hidden disabilities in the form of the Air Carrier Access Act (ACAA) Title 14 which prohibits commercial airlines from discriminating against passengers with disabilities.

The airport experience

Now, let’s look at the travel experience from the point of view of an autistic passenger. As everyone knows, the experience of travelling through an airport is a stressful enough experience for ordinary passengers – with queues, crowds, noise, security checks, delayed or cancelled flights – and all that is before you even get aboard an aircraft. Having a hidden disability is stressful enough at the best of times but is even worse when travelling. For people with autism, air travel can be a confusing and even frightening experience. In addition to the problems encountered at airports and in aircraft, the situation is not helped by the fact that your disability is invisible to others.

The advice given by the National Autistic Society (NAS) is that whoever is accompanying the autistic person should conduct advance research into both the journey and the destination to check what facilities they have and whether there are staff who are trained in  an understanding of autism or disabilities in general. It recommends that first time flyer autistics should try to go on short haul flights.

The NAS also recommends that autistic travellers should be involved in the planning and booking process, as sudden changes in plans or routines may cause anxiety and meltdowns. This can include using the internet to see images of where you will be going and creating ‘social stories’ in which you discuss situations which might occur and how you can deal with them – such as airport security, boarding an aircraft or flight delays. It also recommends contacting the airport and airline to see if they can provide any help. Another suggestion is to prepare an information card (which can be in different languages) to show to staff or people you may encounter to inform people about autism and how best to deal with it.

Many airports provide special lanyards or wristbands which allow staff to discreetly identify travellers with autism or other hidden disabilities. Autistics often wear a sunflower lanyard which is an internationally recognised symbol for hidden disabilities. Airport staff have been trained to recognise the lanyards and to give individuals with hidden disabilities the option to identify themselves as needing assistance.

Some airports also have special ‘quiet routes’ to enable hidden disability passengers to avoid crowds. A number of airports also offer quiet rooms or offer the option for families to go to the airport in advance to do a practice run of the security process and mock boarding, to get a deeper understanding and familiarisation of the experience before travelling.

Many airports include a section on their websites on their provision of services aimed at passengers with hidden disabilities. Examples include:

– Gatwick Airport, which has won an Autism Friendly Award, offers downloadable visual guides of the airport and lanyards can be worn. North Terminal has a sensory room for those travelling who might benefit from a calm and relaxed environment before their flight.

– Manchester Airport also has a range of measures to help autistic children, including a downloadable autistic awareness pack on its website which provides a virtual journey through the airport.

– Newcastle Airport offers an ’autism passport’ to help you through the journey which also includes the use of Fast Track lanes at security. A guide to the airport and an activity booklet are also available.

– Belfast City Airport has five videos on the various aspects of the airport journey from the ‘child’s eye view’ plus a green Hidden Disabilities lanyard. It also offer advance familiarisation visits.

A summary of autism-friendly UK airports can be found on the Airport-parking-shop.co.uk website: https://www.airport-parking-shop.co.uk/blog/uk-airports-need-step-assistance-autism/

Is this really helpful?

In researching this article, Jennifer and I looked at the advice given by airports and airlines aimed at autistic travellers and found that, while they were a move in the right direction, there were still some issues which needed resolving. The first of these is that the services appear to be aimed at children and ignore the problem that there are also autistic adults. They also assume that the autistic passenger is travelling accompanied.

There could also be issues with going through security checks, as many autistic people are hypersensitive to the sound of alarms or to touch if searched. Interestingly, Heathrow says on its website that passengers’ feedback has said that using the fast track facilities has actually resulted in more discomfort to hidden disability passengers because they are too fast and the airport recommends using the standard security lanes where passengers will be pointed to the shortest available lane and may be shown to the front of the queue.

While welcoming the offer of going through airport security in less crowded lanes, Jennifer was less sure about the autism-friendly quiet rooms. In practice, these might not be as quiet or as uncrowded as desired. She was also concerned about a lack of windows.While the idea of advance familiarisation visits is a good one, it is not always practical if you do not live anywhere near the airport. The advance visit would also have to be restricted to the landside part of the airport and so could not provide any idea of what to expect in a security queue or departure lounge.

Another issue was what to do in the event of flight delays or cancellations at the airport, as some autistic people find it difficult to sit still for long periods of time. Autistic people can become more anxious in situations where events do not follow a set schedule. Jennifer was also concerned about whether they were any provisions to assist autistic passengers in unexpected emergency events, such as an airport evacuation.

The aircraft experience

Once they have arrived at the departure gate, autistics now face a new set of challenges. Under the CAA regulations, carriers must make all ‘reasonable efforts to arrange seating to meet the needs of individuals with disability or reduced mobility on request subject to safety requirements and availability’.

It is usual practice for disabled passengers and those with reduced mobility to be boarded first. While agreeing that this is a helpful practice, Jennifer observed that there could be issues from other passengers who might object to seeing someone who – from their perception – appears to be perfectly fit and healthy, being given priority to board an aircraft before them. There could also be anxiety problems if autistic passengers are left waiting in unfamiliar surroundings, such as on an airbridge.

Where to sit – a fear of enclosed spaces versus proximity to exits. (Accessible Tourism)

Where best to sit aboard the aircraft is also a problem. Jennifer explained how there was a conflict between two requirements of some autistics – one being a dislike of enclosed spaces and another of wanting to be close to an exit. Being seated at a window seat is good because there is a view out which will reduce feelings of claustrophobia. However, if the adjoining seats are occupied by strangers, this will increase feelings of anxiety over feeling too enclosed.

Window seats may be best for passengers who may be irritated about having to constantly get up or may be worried about sitting next to a stranger, whereas an aisle seat would be better for passengers who may feel enclosed and enjoy a walk around the aircraft or need to use the toilet regularly.

Because the needs of people with hidden disabilities are diverse, the CAA regulations require that airlines should adapt their seating policies to incorporate such requests (for example, a person might need to sit near a window to ease anxiety and stress). Accommodating such seating requests may require the airline to move other passengers. In order to avoid this situation, airlines should seek information on seating needs as early as possible.

Under the regulations, carriers must make all ‘reasonable efforts’ to seat an accompanying person next to a person with hidden disabilities. Notwithstanding any safety considerations, it is particularly important that people with hidden disabilities are not separated from accompanying persons; to do may cause significant anxiety and distress. A person with a hidden disability who travels without an accompanying person should be allocated seats so that visual and audible communication can be established with the cabin crew (ECAC Doc 30 Annex 5F section 6.2c).

Passengers with autism may also be travelling with comfort items, such as weighted blankets, noise-cancelling headphones, sensory toys or lap pads.

General advice on flying for passengers with hidden disabilities can be found on: https://www.alternativeairlines.com/flying-with-a-hidden-disability

Service dogs and comfort animals

All of which brings us to the subject of dogs. A few words of clarification may be useful here regarding the definitions between two different types of dogs used to assist autistic and other neurodiverse people.

Service dogs – dogs trained to perform tasks for the benefit of an individual with a disability. Also referred to as assistance or support dogs.

Emotional support animals (ESAs) – dog and other animals which are not trained but which provide emotional support and alleviate symptom of anxiety and stress. Also referred to as comfort or therapy animals.

Most airlines allow passengers to take assistance dogs to accompany disabled passengers in aircraft cabins, provided the dogs have been properly trained, can be relied upon to behave well and confirm to local health rules. However, there are some restrictions on ultra long haul flights. The rules as to whether to allow non-trained ESAs into aircraft cabins depends on the policy of individual airlines. Up to the end of 2020, US airlines were obliged to allow passengers to take comfort animals with them for free on the aircraft. However, some passengers took a somewhat broad definition of what constituted as a comfort animal and the Internet is full of stories about people trying to bring strange and unlikely animals with them on aircraft, including pigs, hamsters, monkeys, turkeys and even peacocks – some of which were refused entry onto aircraft and some of which caused trouble when they were aboard. There were also cases of people with no disabilities, either physical or unseen, paying for fake certificates for emotional support animals (ESAs) to take their pets with them on flights for free. Unfortunately, whether the value of some animals for emotional support was justified or not, the result led the US Department of Transportation to say that unusual animals on flights had ‘eroded the public trust in legitimate service animals’.

In December 2020 the US Department of Transportation announced a revision to the Air Carrier Access Act. As a result, the rules in the US were revised so that, from 11 January 2021, only ‘service animals’ will be permitted. The new rules mandate that airlines must still accept psychiatric service dogs (PSDs) on flights who can fly in the cabin with their owners free of charge and are exempt from size and weight restrictions. The ACCA states that: ‘a service animal means a dog, regardless of breed or type, that is individually trained to do work or perform tasks for the benefit of a qualified individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability. Animal species other than dogs, emotional support animals, comfort animals, companionship animals, and service animals in training are not service animals.’

The decision was applauded by airlines, which had been trying for years to change the rule, as well as airline employee unions. The President of the US Association of Flight Attendants was quoted as saying: “The days of Noah’s Ark in the air are hopefully coming to an end.”

The current situation in the US is that operators can now make their own decisions on whether or not to allow emotional support animals on their flights. Most US domestic carriers now do not allow ESAs but some international carriers still allow them, including Air France, China Airlines, KLM, Lufthansa and Singapore Air – although most only accept dogs. However, an ESA letter from a mental health professional is required. Airlines also require passengers to complete an ESA questionnaire to establish that the animal should be well-behaved and calm on the aircraft.

For more information on airlines which do permit ESAs, see: https://pettable.com/blog/which-airlines-allow-esa-animals. A selection of US and Canadian airports which have therapy dogs is listed on: https://www.fodors.com/news/photos/12-north-american-airports-where-you-can-pet-a-therapy-dog

Another challenge facing autistic passengers is that there have been incidents in which under stress, people with hidden disabilities have exhibited ‘challenging behaviour’ – which has led to the passenger being denied boarding or even the aircraft being diverted for an emergency landing. Such incidents have resulted in autistic passengers being regarded with suspicion and being severely put off flying.

On reviewing these regulations, Jennifer had a number of comments. On the subject on service animals, Jennifer welcomed the policy by the majority of airlines to allow trained dogs to accompany passengers with hidden disabilities. Turning to the subject of comfort animals, Jennifer felt that the decision not to allow them on board most aircraft was unfortunate. Having benefitted from the emotional benefits of having a comfort animal, Jennifer felt that airlines should be more open to allowing them to travel with their owners, provided that they could be proved to comply with basic behavioural standards. More efforts are also needed to be taken to make it more difficult for passengers to obtain fake certificates and making travel more difficult for disabled passengers.

Speaking as an autistic person, Jennifer was concerned that negative publicity from recent incidents in which autistics were restrained or removed from aircraft was damaging both to the public perception of autistic passengers and to the emotional wellbeing of all autistic passengers. Increased awareness in both passengers and crew is a very important factor in preventing this and to know what to do in a meltdown situation.

Need for joined up thinking

In conclusion, there are still many challenges to be overcome before autistic passengers can be comfortable in flying. One of the major issues is that a lack of public awareness of how challenging autistics can find the air travel experience, both from the general public and from airport or airline staff who are not aware of the personal challenges involved.

There is also not yet a joined-up end-to-end approach to supporting passengers with hidden disabilities across different airlines and airports around the world. Autistics who may be recognised and supported at one airport may not find that help at another. There are also discrepancies between different carriers over the carriage of comfort animals.

Some of these issues have been recognised by the International Air Transport Authority (IATA) which is calling for a joint government and industry approach that meets the needs of passengers with disabilities while ensuring efficient and safe air transport. Working with the International Civil Aviation Organization (ICAO), IATA is campaigning with states to closely involve the airline industry in the inclusion of the UN Convention on the Rights of People with Disabilities (UN CRPD) into national aviation legislation and policies related to accessible air transport.

In February 2021 IATA published the first edition of the IATA Passenger Accessibility Operations manual (IPAOM) which provides guidance to support airlines in assisting passengers with disabilities, with the aim of delivering a smooth and dignified travel experience throughout their entire journey. It can be also used in an operational environment, as a basis for training.

The ethical argument is clear – everyone, regardless of whether they are disabled or not, should have the same rights to enjoy travelling by air. There are also commercial benefits to be gained. If regulations and policies regarding passengers with hidden disabilities are standardised so that autistic and other neurodiverse passengers gain equal access to air travel and feel encouraged and welcomed, then there is a additional potential market to be realised by airlines and airports.

More needs to be done and it is hoped that this article has raised awareness of some of the problems faced by neurodiverse air passengers and will spark a debate on how these issues can be resolved.