Significant changes in how autistic people with a learning disability access and experience healthcare can and should be informed by stakeholders, including the patient and their family. This article provides different examples and suggestions from experts by parental experience.

  • Jim Blair Consultant Nurse Learning (Intellectual) Disabilities, Great Ormond Street Hospital
  • Mary Busk Expert by Parental Experience
  • Simon Hawtrey-Woore Expert by Parental Experience
  • Ismail Kaji Expert by Lived and Parental Experience
  • Ciara Lawrence Expert by Parental Experience
  • Gail Moody Expert by Parental Experience
  • Yvonne Newbold Expert by Parental Experience
  • Lauretta Ofulue Expert by Parental Experience

Being autistic and learning disabled means travelling through the maze of life that is geared towards people who are neither, and this can be very difficult. The multisensory stimulations, lights, noise and apparent endless questions, as well as misinterpretations of what is being communicated and what is being received, frequently make the world a challenging place with which to engage. Traversing healthcare systems and structures is hard for many of us. It can be like reading instructions in a language you do not understand and being expected to follow the set route, whether or not it suits you, in order to attend the appointment that is booked in your name.

The voice of experience

This chapter will focus on seeking to reset the lens for health professionals and others to enable them to gain insight into how to ensure each encounter is a positive one leading to better experiences and care outcomes. The voices of experts by lived and parental experience are throughout the chapter acting as guides in how to get care right. When the recipient of healthcare is using forms of communication other than speech, the practitioner will need to pay close, patient and careful attention and take their lead from the individual and the people who know them best.

Ciara has a learning disability and works at Mencap, here she talks about what is important to her when interacting with health services.

‘Having accessible information understanding what is being said to me. I get anxious….I need reassurance of what is going to happen. It is hard in dentists and hospitals. I have a learning disability they need to be clear with me need to be consistent. I asked for reasonable adjustments and then I got them…being able to say how I felt. This was when I had a wisdom tooth taken out. I saw the chair and had a meltdown. The dentist said do you want to have it today or come in another time and we will put you to sleep. That was a positive experience. A small thing to make a big impact like having my mother with me when I had a GA [general anaesthetic].’

Ciara talked about how small things can make all the difference. Ismail has had some similar experiences to Ciara, both as a man who has a learning disability and as a father of young children.

‘Health staff need to change attitudes, way they speak not jargon medical terms speak slowly…think about how the person/parent is feeling… communicate with patients. Don’t rush things. Remember people will be nervous. Explain things in order it is difficult to remember things. It is helpful to use visual examples like pictures, showing what could be used….and then checking understanding. I would like to call after to check what was said because I forget what was said.’

The complexities of navigating healthcare services and settings can be very traumatic for autistic individuals with learning disabilities and their parents. There are however occasions when things go very well, but experience would suggest that this is not always at the start of the journey.

Pain cannot always be seen but that does not mean it is not felt

Lauretta illustrates how her four-year-old learning disabled autistic son, Otito, appears to express pain in ‘atypical’ ways. Here she discusses experiences with Otito when he was in hospital with pancreatitis.

‘The pain charts recorded higher scores for pain based on normal responses. For example screaming, being irritable and displaying active movements especially kicking to show pain was ranked highly. They could not justify the need to give the level of pain relief I was requesting since the pain scores they charted did not support my claim.

However, given his status as a severely autistic child with learning disabilities it was really not far-fetched. As time went by my son became very withdrawn. While what the health professionals saw was more of a quiet boy, what I saw was less of my child and more of a chronic patient. To them his quietness was only a confirmation that he was after all unwell.

The learning disability nurse was very helpful and approachable. I was able to discuss my concerns easily with him. It was relieving to find someone – a health professional who finally understood my son’s plight. He simply got it! The pain responses that I described to him were anything but alien. In fact he said it was quite common with children who had the level of autism that Otito possessed. It was also a relief to know that my son was neither alone nor was his case beyond redemption. The new pain document accommodated my son’s unique responses to pain. Things (like being quiet, curling up in a foetal position, not moving around, staying in corners, grinding his teeth, closing his eyes even while awake, interacting less with people or toys etc) that were previously being overlooked were not only taken into account but in fact given higher scores using the new pain score sheet. It helped the doctors understand my son better. By using this new pain score sheet they could also justify the need for a higher level of pain relief (something that was also an important requirement for dispensing them).’

Seeing the whole person – the hospital passport

Being able to understand a person is essential in order to know how to meet their needs. Lauretta suggests that hospital passports can play a central role in this process. The hospital passport shaped a better experience of hospital care for Otito and has been effective for others.

‘The learning disability nurse also made us aware of something called a “hospital passport”. By the time I had filled out a “hospital passport” for him, it served as a well-documented description of nearly everything pertaining to my son. It was also an introductory piece of document that saved a lot of time by acquainting Health Care Professionals with my son’s unique characteristics before an actual interaction.

I was able to record everything from important information (like my son’s name, date of birth, hospital number, NHS number, his weight, his height) to seemingly less important information (like his mealtimes, his sleep times, bath times, walk times) and silly information (like his favourite toy – for example his tablet, and the need to make sure it always had power, the things that worked – for example giving him his toy stethoscope before carrying out observations, things you must never do – for example administer his medicines without showing him the tray). I was also able to include many of the less important but routine activities that could set him off if not followed to the letter.

As a severely autistic child understanding and applying information about all these activities were sometimes the difference between a good and bad day for Otito. These were the things he understood. They also provided him with stability and kept him feeling safe. Having the “hospital passport” was a relief to me as a parent because not only could I have a copy, I could leave one in his hospital file.’

Our NHS learning disability autism success story – a dental experience

Yvonne describes here a successful encounter with the NHS with her son Toby, a young man who has autism and severe learning disabilities.

‘Of all the squillions of NHS appointments that we’ve clocked up over the years, seeing his dentist has to be the least stressful and the most enjoyable.

However, Toby doesn’t really make it easy for them. His favourite moment is always if he’s able to outwit them and take control of the chair moving buttons himself.

Toby is profoundly disabled, and he has the cognitive functioning level of a neuro-typical two year old. He is nonverbal, he has autism and he also has extreme oral sensitivity issues. He was tube fed completely until he was a teenager, and so he finds it almost impossible to tolerate anything in his mouth, nor does he have the comprehension to understand why co-operating with the dentist is a good idea.

They [the dental team] ask for our help and then welcome it to keep Toby relaxed and happy throughout the appointment singing his favourite songs, letting him watch Mr Tumble on his iPad. They just “get it”. They understand that people with learning disabilities or autism or both can perceive everything just that little bit differently. They know that trying to reason with Toby, or getting stern and officious, will simply not work. Most of all, they grasp that …the whole time Toby is the most important person in the room.

Toby has a very traumatic medical history stretching right back to when he was born. Most of his first six years were spent in hospital, and it was never expected he’d ever survive more than a few more weeks. None of us dared hope that we’d ever have him long enough to celebrate his 22nd birthday, which we did earlier this year.

Although his health is no longer as volatile as it once was – cannulating Toby is never easy, and now that he’s bigger and stronger and able to resist much more, we weren’t even sure if they’d be able to manage to sedate him. Of course we also knew that we would be meeting a new team, people we didn’t know and who didn’t know Toby. Another concern was that Toby now lives in a care home which can make my role as his no-longer-full-time-carer an awkward one, particularly with a new team who don’t know Toby.

The appointment went wonderfully well. Two of the three staff members had never met Toby before, but that didn’t matter because they understood how essential it is to make him feel important. They asked me questions, they involved all of us in Toby’s care, and they made him feel welcome, happy and valued. They listened to any of our suggestions and then they followed them. Everything was about Toby and making it work well for him. They even chose to start the sedation process with nasal Midazolam, to cut down any distress caused by vein hunting with needles.

Toby can’t talk so he has no way of telling us if he had toothache. He could be in excruciating pain and although his behaviour might indicate that he was in some way unwell, it would take us days, weeks or even longer to ascertain that it was tooth related. Even once we had worked it out, he wouldn’t co-operate with a full dental examination, and it would take a lot of further planning and preparation to admit him to hospital for dental work under anaesthetic. Now, for the first time in his life, I have the reassurance of knowing that every six months minor problems will almost certainly be picked up before they escalate into full-scale extremely painful toothache.’

‘Why isn’t there a designated and highly trained team of learning disability specialists available for blood tests or X-rays or A & E admissions? Why can’t every NHS team understand the importance of including the family and carers in every care-based decision regarding people with learning disabilities? Why can’t every NHS appointment for Toby be long enough to work at gaining his trust and getting the best possible level of co-operation from him?’

Four simple steps could make all the difference

Yvonne Newbold suggests four straightforward steps to improve access to healthcare. She also offered her services to educate health practitioners. Her four suggestions are:

‘1. Involve the families and carers in all learning disability care.

2. Actively invite and listen to suggestions and ideas from families and carers, and then follow their lead.

3. Factor in extra time at every appointment.

4. Ensure all staff have the patience, kindness, understanding and training to work with anyone with a learning disability.’

The four steps to getting it right as outlined by Yvonne are simple, but as her story of Toby’s experience shows, they can be highly effective.

Simon and Mary continue the theme in their reflections on what works well for Simon’s daughter Scarlett and Mary’s son Alex.

Understand what makes someone tick

Scarlett is 11 years old and has severe learning disabilities and multi-sensory processing difficulties. Having a hospital appointment can be frightening, but for patients with a learning disability and who are autistic, this is magnified due to their difficulty with interpreting, making sense of and accepting what’s going on.

Simon explains:

‘Scarlett has no attention span and has sensory sensitivity. She can’t filter anything out, so when she goes onto a ward, she is overwhelmed by the people, machines, colours and noises.’

Tapping into the knowledge of parents and supporters is vital in order to tune into the individual and to see the whole picture.

Reflections on what works: understanding the whole picture

Mary:

‘Alex, our severely learning disabled son with autism, is now 17. Our best experiences of healthcare have been when people have cared about us and about Alex. Learning disability nurses have been a highlight because we have not had to explain Alex to them. They have understood his communication, behaviour and health needs instinctively.

Alex’s ear nose throat (ENT) surgery when he was younger was good because we were able to get the right medical care for his needs. Getting grommits and having his tonsils and adenoids removed greatly improved his overall health. Before that he was chronically sick and lived on antibiotics. We explained to medical professionals that as our son had such severe problems with language and communication for example, we wanted his physical health to be as good as possible. Otherwise coping with very poor health would make efforts to develop his language, communication and learning much harder. They understood this. That personal understanding and empathy from the ENT consultant in particular meant that we could call on him when other crises arose as he got older. That is because that consultant understood the whole picture for our son, that he could not speak or indicate pain or say what the matter was.’

The possible becoming impossible then possible again

‘As Alex got older we thought things would get easier but they became more difficult. The possible became impossible – such as blood tests and cooperating with many procedures. A poor experience of our son being asked to leave a hospital because he was considered a health and safety risk eventually became a positive experience. With the support of a learning disability nurse he had a number of procedures done at once and we arranged for sedation before and on admission to hospital.’

Always a person – it’s a principle and a right

‘We have sensed sometimes that because our son cannot speak that somehow he seems to be less of a person to some people. This leads to our need to advocate strongly for the best possible care for our son as we would expect for ourselves and everyone else. A second key principle is to have a preventative and early intervention approach so ensuring that health issues do not develop. A third key principle is that his needs should be met with the right services. For example Alex still needs therapy input from physiotherapy, occupational therapy and speech and language therapy to ensure that he is able to communicate, develop good physical health and manage his sensory needs as well as possible.’

The issues raised and reflected on by Mary are essential in order to provide care in health settings that effectively meet the needs of autistic people with a learning disability and their families.

Gail discusses some key issues in relation to how good care is not about fitting people into the system but making adaptations. Gail is the mother of a young teenage girl with multiple sensory and processing issues as well as numerous health challenges.

One size does not fit all – good experiences

Gail:

‘A good experience for any child with a learning disability is one that is child-centred, inclusive and as individualised as the setting allows. A situation in which the health workers understand and respect the fact that just because different children may have the same disability doesn’t mean that a ‘one size fits all’ approach is either acceptable or workable.

Generally small adjustments in the way the clinics, wards etc. are run when combined with education about and an understanding of generally acceptable codes of practice will make the visits as positive and manageable as possible for all concerned.

An example of a positive and productive hospital visit is: the staff had read my daughter’s personal passport and were aware of her complex needs and the best way in which to approach her. She is deaf/blind, has multisensory impairment and Down’s syndrome amongst other things. The staff were aware of her sensory issues and were mindful of not overcrowding her and offered her a quiet space if that would make the whole experience both more accessible and more tolerable for her. The consultant actually asked how close he needed to get so that she could see him talking to her! He also took time to listen to her questions and answered her rather than talk directly to me. This made her feel totally included and a valued part of the whole process, that she could make a decision about what was happening to her rather than simply being the person to whom things were done.’

What would health professionals benefit from knowing and doing?

  • Listen to the parents, they are the experts in their children.
  • Know the distance at which they can safely interact with the child, young person or adult whilst still respecting their space.
  • Understand that it is not appropriate to approach people from behind and surprise them with a hand on their shoulder.
  • Be aware that many people with learning disabilities and autism find it almost impossible to filter out sensory stimulation.

Ismail and Ciara came up with the following points:

  • Understand the person.
  • Be patient and calm.
  • Be supportive in the best way for that person.
  • Adjust your thinking and focus.
  • Know that small things make a big difference.
  • Build in extra time.
  • Give clear instructions.
  • Avoid jargon.
  • Break things down – what is going to happen, when, how and who will be involved?

T.E.A.C.H.

In order to ensure care is adjusted to meet a person with learning disabilities’ specific needs, a TEACH approach, first developed in Hertfordshire by the community learning disability team, is required:

Time – take time to work with the person.

Environment – alter the environment to meet the person’s needs, for example, by providing quieter areas, reducing lighting and minimising waiting times.

Attitude – have a positive, solutions-orientated focus.

Communication – find out the best way to communicate with the person and their family, carers and supporters, and also communicate this to colleagues.

Help – consider what help the person and their family, carers and supporters need, and how can you meet these needs.

(Blair et al, 2016)

Conclusion

Small differences can lead to big changes which can escalate if carried out by many people on numerous occasions. Big changes in how autistic people with a learning disability access and experience healthcare can and should be informed by stakeholders, including the patient and their family.

Blair et al (2016) identified the following simple steps:

  • Take time to be with the person and their families to understand their lived experiences.
  • Pick up not only on what is said, but also what is not said, and avoid hurrying the interaction.

It is essential to remember that every interaction counts and each contact matters. Health professionals only spend a fraction of time with a person, so it is vital to gain as much insight as possible from the person and those who know them best, and to consider all that is being relayed, verbally and non-verbally. In doing so, healthcare practitioners can refocus how they interpret what they see and develop their understanding that what is seen superficially is not all that there is.

Reference

Blair J, Busk M, Goleniowska H, Hawtrey-Woore S, Morris S, Newbold Y & Nimmo S (2016) Through our eyes: what parents want for their children from health professionals. In: S Hardy, E Chaplin and P Woodward (Eds) Supporting the Physical Health Needs of People with Learning Disabilities (pp197–212). Brighton: Pavilion Publishing and Media Ltd.

Useful websites and resources

British Institute of Learning Disabilities (BILD) 

The institute helps develop the organisations that provide services, and the people who give support.

Books Beyond Words

Publishes accessible stories in pictures to help people with learning and communication disabilities explore and understand their own experiences.

Disability Matters 

An e-learning resource to enhance the understanding and skills of staff.

Down’s Side Up

Gently changing perceptions of Down’s syndrome.

Easy Health

Provides over 250 free accessible leaflets, health guides and videos.

Mencap

A group of organisations working towards better healthcare, well-being and quality of life for people with a learning disability.

NHS Choices, Going into Hospital with a Learning Disability

Information on preparing a person with a learning disability for hospital.

University of Hertfordshire Intellectual Disability and Health

Understanding intellectual disability and health.

Other useful reading

Blair J, Anthony T, Gunther I, Hambley Y, Harrison N, Lambert N & Stuart C (2017) A protocol for the preparation of patients for theatre and recovery. Learning Disability Practice 20 (2) 22–26.

Blair J (2017) What you see isn’t all there is…understanding people with learning disabilities and health issues. Care Talk 62 June 17 12.

Blair J (2017) Diagnostic overshadowing: see beyond the diagnosis. British Journal of Family Medicine Jan/Feb 17 34–35.

This article was originally published in Autism and Intellectual Disability in Adults, Vol. 2, in 2017.  It is reproduced here by kind permission of Pavilion Publishing and Media Ltd.