Making information and the words we use accessible

There are different ways to make information accessible to people with a learning disability and autistic people.

Remember everyone communicates differently. Not everybody can read. It might be better to give people information by talking to people, this could be face-to-face or by film. Other people find information that is written down more accessible.

The best way to find out how to make information accessible is to ask the person or the people you will be giving the information to.

It can also be very useful to talk to families and carers to find out how best to share information with each person.

‘Easy read’ is one way to make information more accessible to people with a learning disability. Easy read information is written using simple words supported by pictures. Not everyone uses easy read – some autistic people find the pictures distracting and need more detailed information.

Writing accessible emails

Here are some tips for writing emails that will be more accessible to people with a learning disability and autistic people who use email.

  • Write short paragraphs and sentences and use bullet points.
  • Always use clear language.
  • Be clear about what you want someone to do and when you want them to do this by.
  • Use Arial size 12.
  • Sometimes it’s better to speak with the person rather than email.

Read more about the importance of using everyday language.

Read about making meetings accessible.

The words we use to talk about people

It is very important to use everyday words to talk about people. This helps everyone to understand and to feel valued.

Using words that are different to how we would normally say things makes it harder to remember that people are people. Disabled people like to be described like everyone else.

  • Use human language. It’s important to remember that people are not service users, clients, patients, beds, LD, cohorts or numbers. These words are not used to describe how non-disabled people live their lives. Labels are for clothes. People are just people.
  • Shorter isn’t always better. For example, most people with a learning disability don’t like being referred to as LD.
  • Make sure that the words you use do not make people seem less human (see words to use and words to avoid).
  • If you do write about people who use a particular service keep the focus on ‘people’. For example, ‘people with a learning disability who use mental health services’.
  • Talk about ‘people who…’ rather than talking about ‘those who…’. ‘Those’ makes us think of people as ‘other’ rather than one of us.
  • Remember that words are powerful. Using the right words is respectful to people and helps show others how to be respectful too.
  • Keep your words simple. Think about how you would explain your work to your family.
  • Talk about people as if they were a member of your own family and if in doubt ask them what words they would like to be used.

Getting language right about autism.

Listen to a recorded webinar about the words we use

Making information and using the right words

Making meetings accessible.

Words to use and words to avoid when talking about people

We can all be sensitive about the words that are used to talk about us.  The suggestions for the best words to use below are based on what a lot of people have told us. However, not everyone will agree on which words they like best.  If you’re working with a person, it is best to use the words they use to describe themselves and their loved ones.

Use Rather than The reason
Full words Abbreviations like LD and CYP Using an abbreviation is disrespectful to the people it refers to (in this case people with a learning disability and children and young people)
Person or people Patient, client or service user We may sometimes be other things, but we are all people first. If you need to be specific that you are talking about people who use a particular service, then talk about people who use a service. Emphasise the people.
People with a learning disability or learning impairment People with learning disabilities People only have one learning disability each.
People with a learning disability or autistic people

or

Autistic people and people with a learning disability

Learning disability and/or autism

Learning disability, autism or both

This makes it clear that learning disability and autism are two different things, and that autistic people aren’t just added on.
Disabled people People with a disability In the ‘social model of disability’ (this is a way of viewing the world, developed by disabled people) people with an ‘impairment’ are disabled by society (the environment, policies and attitudes), not the other way around.
Showing distress in a way that services perceive to be challenging Challenging behaviour or behaviour that challenges services This phrase is problematic because it places blame on a person who is showing distress, rather than on the ways that their needs may not be being met. It is also too general and means different things to different people, so shouldn’t be used.

There is not an accepted alternative.

However, it is sometimes necessary to talk about ways that people show distress, and the ways that services might find this a challenge. It is better to be specific – for example, if you are talking about someone having a meltdown because they are distressed, say this. If you are referring to somebody being physically violent, it is okay to say so, acknowledging that this is a way of communicating discomfort or unmet need.

It is important to note that just because a person acts in a way is perceived as unusual to someone who is not autistic and doesn’t have a learning disability – but is causing no harm to themselves or other people – this should not be considered ‘challenging’ and also may not be communicating distress.

Support Care Support is about helping someone be as independent as possible. ‘Care’ suggests looking after someone who cannot do it for themselves.
Group of people Cohort A cohort is a way of talking about people which suggests people are all the same. Saying ‘group of people’ emphasises that people are people and not just numbers. It’s also an easier word to understand.
People or person in hospital Beds When we talk about beds, we need to remember we are actually talking about the person who is in the bed.

 

Going out Accessing the community In everyday life people go out. ‘Accessing the community’ makes it sound that people are not already part of the community.
Home Placement This is about describing people’s lives in ordinary ways. But remember that sometimes it is not appropriate to call something a home when it clearly is not. For example, a hospital admission for assessment and treatment is not a home.
Break Respite Use the simplest word to describe this – a break.

Respite actually means the laying down of a burden, which isn’t a good choice of words.

 

Only describe this as a holiday if it will seem like a holiday for the person going on the break.

Going home or getting out Re-settlement,
repatriation or
re-homing
We re-home animals from a shelter. This is not what we want to do with people.
Choice Compliant/non-compliant People should be able to make informed choices and take risks rather than being forced to do things which professionals think are good for them.
Children and young people CYP

Getting words right about autism

The language we use to talk about autism is important because it can affect what people think about autistic people. Getting it right will help people get the right kind of support and services.

Five top tips

  1. Talk about autism positively. There are many positive things about being autistic. Many autistic people see autism as part of who they are, rather than something separate, and prefer to be described as ‘autistic’ or ‘on the autism spectrum’ – rather than as ‘someone with autism’.
  2. Do not use negative language like suffering from autism, symptoms and treat. Instead talk about characteristics, support and reasonable adjustments.
  3. Every autistic person is different. Try to make sure people know this in all communications.
  4. Autism is not a learning disability or a mental illness. But some autistic people also have a learning disability and many people have a mental health problem.
  5. Some people on the autism spectrum understand language very literally. Avoid phrases that don’t say what they mean. Like “it’s raining cats and dogs”. Use clear, everyday language.
Use Avoid The reason
Autism

or

the autism spectrum

ASD, Autism Spectrum Disorder Don’t use abbreviations like ASD.

Autism Spectrum Disorder is the official way of describing autism but many autistic people and families feel that the term ‘disorder’ is too negative for everyday discussions. Autism is a difference rather than a disorder.

The words autism and autism spectrum are widely accepted by autistic people and their families.

Autistic adult/people

or

People on the autism spectrum

Adult/person with autism This is a sensitive issue in the autism community, as many autistic people see autism as a part of who they are – rather than something separate.

Research shows that there isn’t a single way which is accepted by everyone. However, autistic and on the autism spectrum were the preferred terms among most autistic adults and families.

People with autism is still used quite a lot, but more and more people do not like it.

Children on the autism spectrum Children with autism There is less agreement about how to describe children. Many autism organisations, particularly those focused on children and young people, use the terms ‘with autism’ or ‘on the autism spectrum’. Research shows that families are divided on which term they like best.
Autistic or on the autism spectrum

or

talk about autism as a condition or disability

Suffering from, mild, severe, disorder, disease Phrases and words like suffering from autism and severe often cause strong reactions from autistic people and families. Many feel this devalues who they are or says that there is something wrong with them.

Talking about the autism spectrum is an easy way around this.

Condition or disability are also widely used, including by autism charities, but some autistic people don’t like them.

Autistic people with/without a learning disability

or

autistic people without a learning disability

High or low functioning

Asperger syndrome

Using high or low functioning is confusing and isn’t liked by many autistic people and families. They feel it is too simplistic. Many autistic people without a learning disability face great difficulty, and ‘high functioning’ does not reflect this.

Asperger syndrome is not an appropriate alternative for high functioning and should only be used when you are talking about someone with this diagnosis. People no longer get diagnosed with Asperger syndrome – though if you are already diagnosed with it then that won’t change.

Characteristics

or

traits

Symptoms Symptoms make it sound as though autism is a disease.

It is also important to recognise that there are many positive things associated with autism, like working hard to achieve things and seeing things in a different way, which can be great for problem solving.

Support

or

adjustments

Treat Words like ‘treat’ mean that people might think that autism is a disease that can be removed or cured. This upsets many autistic people and families. With support and/or reasonable adjustments, many autistic people live independent lives.
Showing distress in a way that services perceive to be challenging Challenging behaviour; behaviour that challenges This phrase is problematic because it places blame on a person who is showing distress, rather than on the ways that their needs may not be being met. It is also too general and means different things to different people, so shouldn’t be used.

There is not an accepted alternative.

However, it is sometimes necessary to talk about ways that people show distress, and the ways that services might find this a challenge. It is better to be specific – for example, if you are talking about someone having a meltdown because they are distressed, say this. If you are referring to somebody being physically violent, it is okay to say so, acknowledging that this is a way of communicating discomfort or unmet need.

It is important to note that just because a person acts in a way is perceived as unusual to a non-autistic person – but is causing no harm to the person or other people – this should not be considered ‘challenging’ and also may not be communicating distress.

People with a learning disability and autistic people

or

Autistic people and people with a learning disability

Learning disability and/or autism; Learning disability, autism or both This makes it clear that learning disability and autism are two different things and autism isn’t just an add on.