In all areas of paediatric practice (and beyond), we come into contact with children with a learning disability, learning difficulties or autism. Terminology is essential not only for making sure we understand a child’s diagnosis correctly but also for providing the best possible care. Getting it right can also help gain the trust of parents and carers, who will often know far more about appropriate language use than we clinicians. This guide aims to describe the key points to remember, some of which are easier to grasp than others.
Let’s start with learning disability or LD. 2.5% of the children in the UK have a learning disability, yet it’s one of the most commonly confused terms. Probably the most pragmatic and descriptive definition is that used by Mencap, a UK charity supporting people with LD: “A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.” The World Health Organisation keeps it short, although open to discussion and interpretation. For them it’s “a state of arrested or incomplete development of mind.”
Having a learning disability means an individual will not only find learning difficult but also face challenges with retaining, processing, reasoning and deducing information. Some people will find different areas of learning more challenging than others. Children with Down syndrome have a relative strength in visual learning and find learning or remembering auditory information more difficult. Building on strengths can help to balance out some of the more challenging areas. Some people with LD may be able to communicate very well, even if they struggle to understand all of what is communicated to them but many will have an associated speech and language problem.
The term intellectual disability, or ID, is used rather than LD, to signify that the condition affects intellect and is lifelong. This fact is important – the individual will need support, depending on their level of disability, for the whole of their life. There are many causes of LD, all involve the developing brain – genetic or chromosomal conditions, intrauterine infections, perinatal hypoxic brain injury to name but a few. After the brain has developed, such an insult is described as an acquired brain injury.
The level of disability may be mild, moderate or severe, depending on IQ, although this is rarely formally calculated and actually doesn’t really add much. Support and care should be tailored to an individual’s needs rather than their IQ.
The term PMLD is used to describe individuals with Profound and Multiple Learning Disability. These patients may have fairly complex comorbidities alongside severe learning disabilities. They can affect not only their ability to learn and process information, but also their ability to communicate and to be independent.
A learning difficulty is very different to a learning disability, and is far more common. Things like ADHD, dyspraxia or dyslexia are all examples of a learning difficulty. They all make learning more difficult, but don’t affect overall intellect or IQ.
Autism, or an autistic spectrum condition (ASC), is not itself a learning disability, although about one-third of people with ASC will also have LD. The National Autistic Society (UK) describes autism as “a lifelong developmental disability which affects how people communicate and interact with the world”. There are lots of different elements, each of which may be present to a greater or lesser extent within one individual, so each autistic person is different from the next. The autistic spectrum is not a linear thing, with someone being more or less autistic. “High functioning” or “low functioning” are not particularly appropriate terms either. It’s more helpful to think about how someone’s autistic features affect them. The most common features include social communication difficulties, sensory processing disorder and restrictive or repetitive movements.
Social communication difficulties include challenges in interpreting body language or facial expression, and reading hidden meaning into words or phrases, particularly when metaphors are used. Sensory processing difficulties involve the body misinterpreting sensations. A light touch may be perceived as very painful whilst a deeper touch may be more comforting. Bright lights or certain noises could be very distressing. Restrictive or repetitive movements are often comforting, or theymay distract from upsetting or uncomfortable situations.
ASC was more commonly known as ASD, or autistic spectrum disorder. The move to calling it a condition, instead, is an attempt to remove unnecessary negativity. ASC encompasses many other conditions such as that previously known as Asperger syndrome. This name is no longer preferred – Hans Asperger has a troubling history. It was used to describe people with normal or even high intelligence, coupled with autistic features. Other conditions included under the ASC umbrella include PDD (pervasive developmental disorder) and PDA (pathological demand avoidance).
Person First vs Identity First Language
We use person-first language for many conditions. Someone with asthma is not defined by their asthma but has a whole identity of their own, so they are described as someone with asthma. Someone with Down syndrome may share certain physical features with someone else with Down syndrome, but they have their own identity and character which is very different from that of others with Down syndrome, so they are described as a person with Down syndrome, not a Down’s person or, even worse, a Downs.
Many autistic people feel that their autistic features form part of their identity – that they would be a very different person if they did not have autism, so they describe themselves as autistic, rather than a person with autism. You can read more about person first vs identity first language here.
And if you can’t remember what to say when?
Ask! It’s always better to ask someone how they would prefer to be described than to guess. All people. whether they have LD, a learning difficulty or ASC are individuals and will have their own preferences, likes and dislikes. Getting the language right can be a great start, but being honest and open when you’re not sure is a very close second.
Really clear blog.
Unfortunately, I have to disagree with the content inasmuch as this is the medical model vocabulary that the Disabled people’s movement stopped using some 30+ years ago. For us, the terms are Learning Difficulty, for people Liz refers to as having learning disabilities, and Neurodiversity, for those whose minds work differently e.g. dyslexia, some levels of autism, etc.
This is because we believe that what disables us is society, not our bodies/minds. This is not to deny that they are different from other people’s and can limit what activities we can engage in, merely to highlight that it is the way society is organised – physically and culturally – and the attitudes of others that create the biggest barriers and exclusion that we experience.
Thank you for this Laura. There’s always going to be discussion around this, which is good as it keeps us thinking about the people involved, not just the words used. There’s a very definite difference between learning difficulty and disability, which I think is accepted by most people with learning disability as well as clinicians. Neurodiverse is a great way to describe people with conditions such as autism, ADHD, dyslexia, and others, and I completely agree with your reasoning for this. You’re right, ASC (which I prefer to ASD for similar reasons to your preference of neurodiverse), and other labels are very clinical, but this blog is primarily aimed at healthcare professionals so takes into account the terms used in accepted healthcare definitions.
I absolutely agree that disability is, in reality, a social construct. Sadly, in order to get the help and support they need, people often need a label to unlock funds and services. In which case, I hope this blog helps healthcare professionals get the labels and terminology as close to acceptable as they can be, whilst not forgetting the real individuals they represent.
A wonderful and very helpful blog. Thank you. I will share some of your information with staff and my network as i feel it’s good for everyone to know some of the changes and language appropriate to use