Our Preferred Terminology

Note: you can download all the chapter pdfs at the bottom of this blog!

Contents

1. Contents
2. Introduction and context
3. How this chapter works
4. Guide to the rating system
5. Preferred Terminology Examples
   1. 1. Use the term Additional Needs and Disabilities instead of Special Educational Needs and Disabilities (SEND)
   2. 2. Use the term Specialist Schools instead of Special Schools.
   3. 3. Do not use descriptive terms like high or low functioning.
   4. 4. Use the word Disability.
6. Report Chapters

Introduction and context

ATLAS aims to bring about positive change for people with additional needs and disabilities. A priority for us as ATLAS members is to actively tackle ableism, stigma, and discrimination in the work that they do. An essential part of this includes raising awareness around the power of language, especially the language used to define disability.

When talking about language, it is important to understand the power of language itself. How language shapes society, culture, the way we see groups of people and even how we see ourselves.

Language can, and does, shape and influence our reality. In this report, we focus on how language can spread ableism, stigma and discrimination.

Aiming to increase the use of language that people with additional needs and disabilities use to self-describe and identify in personal and professional settings.

How this chapter works

We felt that presenting just a list of words would not be enough to help professionals, services and the public understand the importance of language in their everyday lives.

Guide to the rating system

When we were discussing in group sessions how to indicate whether words should not be used, should be used with caution or are okay to use, we initially discussed using a traffic light system. However, it was found that some words can be more (or less) appropriate in different situations.

Therefore, in this report we categorise words using an adapted RAG (Red, Amber, Green) rating system: red words, red-orange words, orange words, orange-green words, or green words. ATLAS recommendations for each of these categories are listed in Table 1.

“The point of orange is that if the disabled person uses it themselves, that’s one thing, but if you use if for them it’s not ok. Ask first”

-ATLAS member

Please remember that this guide should not be used to overwrite the lived experiences of others. We would always encourage professionals to communicate with the people they work with and use the language that they self-identify and describe themselves with, even if that differs from the language suggestions we provided here. If in doubt, ask.

Category	ATLAS Recommendation
Red	We recommend that red words are not used because they are harmful and may be offensive. We believe these words spread ableism, stigma, and discrimination
Red-Orange	We recommend that red-orange words are not used to talk about all young people with additional needs and disabilities. However, some individuals may prefer this language, or the word may be deeply entrenched into a system that will need time to adapt its language.
Orange	We recommend that orange words are not used without the permission of the young person(s) with additional needs and disabilities that you are talking to or about.
Orange-Green	We recommend that you are careful when using these words as whether or not they are appropriate to used may vary depending on the person or group you are talking or referring to. A majority of people may have no problem with these words, however there will be people who prefer to self-describe differently.
Green	We would like to encourage you to use green words. These words are used by us ATLAS members to self describe and identify.

Table 1- ATLAS language recommendations for each word category.

Preferred Terminology Examples

1. Use the term Additional Needs and Disabilities instead of Special Educational Needs and Disabilities (SEND)

“We don’t like to be called special.”

-ATLAS Member

“[Special] is a euphemism. The way that it works with euphemisms is that they’ll put a euphemism on a term that is regarded badly by society. But unless you change the underlying attitude then the new word will just become a bad word in itself.”

-ATLAS Member

During ATLAS sessions we discussed how people wouldn’t be able to immediately stop using some of the acronyms with the word “special” because the term “special” is used nationally for young people with additional needs and disabilities. This includes the acronyms SEND (Special Educational Needs and Disabilities), SEN (Special Educational Needs) and SENCo (Special Educational Needs Co-ordinator).

Therefore, we have allocated a red-orange rating: it is ok to use for now, however we would like to encourage professionals to start moving away from terms that contain the euphemism ‘special’.

SEND, SEN, and SENCo are red-orange terms.

Not only do these acronyms include the word special, but they also relate someone’s needs directly to an educational setting. We want these terms changed to remove the ‘educational’ component from the descriptor.

“It is not just in school but out in society.”

-ATLAS Member

Additional needs and disabilities is a green term.

Instead, we would like the term additional needs and disabilities to be used. We also recommend asking the young people that you work with what words they would like to replace these terms.

2. Use the term Specialist Schools instead of Special Schools.

“I tend to use the term specialist when talking about schools instead of special. They are targeted for a specific thing, so they are specialist, not special.”

-ATLAS Member

The term special school is used to describe a school that is for children or young people with additional needs and disabilities.

Special school(s) is a red term.

Specialist school(S) is a green term.

3. Do not use descriptive terms like high or low functioning.

Descriptive terms are words or phrases that are used to further define a diagnosis. During ATLAS we raised that these words are often used to place people with additional needs and disabilities onto a linear scale.

“No-one is in a box, no-one is linear.”

-ATLAS Member

There are two examples in particular that ATLAS recommends people stop using and that is high and low functioning or cognitive functioning.

The terms high or low functioning are rated as red.

“People find high functioning and low functioning very offensive.”

-ATLAS Member

The term low cognitive functioning is rated as red.

“I would say I would be called low functioning. It separates disabled people. I’d say it would make people feel different and not in a good way. You’re making another minority.”

-ATLAS Member

Disability is fluid and therefore viewing the needs of disabled people in a linear way does not reflect reality. Having such a restrictive label attached to us can be very limiting in the way we are then treated. As disabled people we can have different abilities to cope at different times, however we can end up being defined by how we were able to cope in a specific moment and/or environment during an assessment. This means that the assessment results may not be applicable to our lived experience as a whole and is not always reflective of how we may respond in a different situation.

“They always think I’m needy or that I don’t need any adaptions, when I’m in the middle and have a spiky profile.”

-ATLAS Member

“A spiky profile is so so so common in neurodivergency as well. That being, having different levels of support needs in different areas.”

-ATLAS Member

“Everyone around me assumes that I am not able to do things. Whereas I can’t do some things some days, but I can other days. Phone calls are difficult for me because I am a selective mute. In person I can write a note.”

-ATLAS Member

“Some people at my Uni use high or low support needs instead.”

-ATLAS Member

4. Use the word Disability.

Disability is a word that is widely accepted by the disabled community as the word that the community identifies with and wishes to be used to describe them. In ATLAS we identified the following reasons why young people might not use the word disability to self-describe and identify:

• Due to ableism, stigma and discrimination, some of us felt differently about the word disability.
• In ATLAS we also recognised that until society is more inclusive, the needs of disabled people will be seen as additional to the ‘norm’. Therefore, ATLAS felt that at this point in time, they could not categorise the word disability as a green word.

Disability is a green-orange word.

When professionals are working directly with young people with additional needs and disabilities, ATLAS would like them to ask those young people how they self-describe and identify, then use that language.

Importantly, when you are talking about or to the community as a whole or are referring to additional needs and disabilities in general, you must include the word disability, so that you are not excluding people or promoting stigma and discrimination through omission.

“Some people have reclaimed ‘disabled’ – some people have reclaimed, some not.”

-ATLAS Member

“Everyone identifies with Disability differently. Some Deaf and Blind people don’t consider themselves disabled. But for me I am chronically ill, so it doesn’t matter where you put me, I’m still in pain all the time.”

-ATLAS Member

Remember,

“Disability is not a bad word.”

-ATLAS Member

ATLAS would like to see a future where people are not uncomfortable or afraid to identify as disabled.

Report Chapters

Chapter 1 ATLAS- Who Are WeDownload

Chapter 2 ATLAS – Our Preferred TerminologyDownload

Chapter 3 ATLAS – Personal Testimonies of Ableism, Stigma and DiscriminationDownload

Chapter 4 ATLAS – The Power of Language Case Study – ATLAS MemberDownload

Chapter 5 ATLAS – Person-First vs Identity-First Language Emma AdsettDownload

Chapter 6 ATLAS – Using Language to Create Safe Spaces for Disabled People – Rowan FosterDownload

Neurodiversity: Gender and Sexuality

Introduction and defintions

It is well noted through observation and research that there is more gender diversity in neurodiverse people than neurotypical people. As gender and sexuality are social constructs, there is speculation that this relationship is due to the fact that being neurodiverse means you are less likely to adhere to cultural and social norms.

You may be wondering what all these terms mean:

• Neurodiverse/Neurodiversity/Neurodivergent – variation in in the human brain. This term is used by people to express that their brains are wired differently due to having neurological conditions and/or disorders: ADHD Autism, Dyspraxia, Dyslexia, etc.
• Neurotypical – this is a relatively new term that is used to describe people whose brain develops and functions in ways that are considered ‘normal’. It is the opposite of Neurodivergent.
• Gender Diversity – is a measure of how much people’s gender differs from cultural or social norms due to their sex at birth.
• Sexuality – is all about how someone identifies themselves in relation to the gender or genders that they are attracted to.
• Social Construct – something that only exists as a result of humans agreeing that it exists.
• Cultural and Social Norms – rules or expectations based on the shared beliefs of different groups of people that guide behaviour and thoughts.

Talking about experiences and difficulties of the LGBT+ community is extremely important to ATLAS members. This is not only because ATLAS want to be strong allies and raise the voices of minorities, but because a number of members are also part of the LGBT+ community themselves.

“When somebody refers to me as female, I think ‘oooh not really but close enough’. It took me a long time to realise that I don’t experience femininity and being female in the same way [as the people around me] because I am not really female.”

ATLAS member

Image by Sharon McCutcheon

Autism and Gender

ATLAS members reflected on how they weren’t told about the relationship between Autism and gender diversity when they were diagnosed:

“When you are autistic you experience gender in a very different way … no one mentioned this to me when I was diagnosed”

ATLAS member

I am nonbinary, I don’t talk about it much because it doesn’t come up that much. It’s very common with Autism but no one told me!

ATLAS member

How masking impacts self-discovery

Masking is a survival technique that is used by people with Autism to hide behaviours that may not be accepted by the people around them. This is often achieved by learning to display neurotypical behaviours. Ultimately, masking results in having to hide the true self to be protected from negative consequences.

“Masking is a trauma response and trauma screws with everything. Trauma affects people with autism a lot more. I don’t know where the mask ends and where I begin.”

ATLAS member

ATLAS members raised that as a result of masking, it can be difficult to work out who they are:

“When I was younger I would take behaviours I would see and mask using them. A lot of people I was around were heteronormative. It makes it hard for me to understand, I can’t always get my head around what I am or what I like because I have masked for so long.

ATLAS member

As a result some members felt unable identify with labels, which could help them find support from peers and communities:

I went to a university LGBT+ society event and someone came up to me and asked: Well what are you? Why are you here? I don’t know what I am because I find it really hard to process.

ATLAS Member

Labels

“Some people find labels helpful and some people don’t.”

ATLAS member

“For me it was empowering to have my labels, it helps me to break everything down to feel like I have control. But labels are limited in how they explain me. Something I found hard to understand was ‘comphet’: How much is me wanting to be loved? How much is me wanting men to validate me? and how much of it is attraction?”

ATLAS member

Comphet stands for compulsory heterosexuality. This is where heterosexuality is assumed and enforced by society.

“On a call I do at uni they put their pronouns in their Zoom names.”

ATLAS member

ATLAS members and staff loved this idea: members and staff are now invited to put their pronouns in their Zoom names if they want to!

Image by Sharon McCutcheon

Family Stigma

“People in my family are really against it [LGBT+].”

ATLAS member

Whilst family relationships can be extremely important for the wellbeing of children, young people and young adults, unfortunately stigma can lead to bullying, rejection and internalised stigma.

“My dad was very girls belong in the kitchen, seen and not heard. He wanted me to be his little girl and when I didn’t he came to disown me for it. It makes it hard for me to accept who I am. I have never felt comfortable with who I am or how I am. So when I hear people who are able to find themselves, I just don’t understand how they can make those decisions. I was told I couldn’t be gay or bisexual because I was just masking.”

ATLAS member

“Fortunately, I know how some people have a good accepting family, really only my mum accepts. My dad and my sisters think I am going through some sort of phase and that I’m probably stupid.”

ATLAS member

Final thoughts

“I think it is interesting how people have such different experiences.”

ATLAS member

Neurodiverse people, people with Autism, people with disabilities are just as different and individual as neurotypical people, people without an additional need or disability. Talk to us, listen to our experiences and ideas: we are experts in our perspective and have a lot to say!

To make sure that the voices of children, young people and young adults with additional needs and disabilities in the LGBT+ community are heard ATLAS will be starting drop-in sessions to provide a safe space and a platform for voices to be raised.

In at the Deep End: How ADHD Shaped the Success of Michael Phelps

Michael Fred Phelps is famous throughout the world for his legendary abilities whilst swimming. Phelps is, by far, the most successful Olympian of all time with 28 Olympic medals of which 23 are Gold. Phelps also has several world records relating to swimming and is the fastest human being alive in the water. Phelps has achieved this success for many reasons, not least being his own hard work and dedication, as well as having a body especially suited for high water mobility. But another factor that may have allowed Phelps to reach such success, much to the surprise of many, may be his ADHD. Phelps was diagnosed with the condition when he was a child, and some believe that this diagnosis played a role in making him such a world class athlete. In examining how ADHD has affected Phelps, we may learn to see Disability in a rather different light.

“I simply couldn’t sit still, because it was difficult for me to focus on one thing at a time”

– Michael Phelps, from his book Beneath the Surface

ADHD, or Attention Deficit Hyperactivity Disorder, is a condition that causes many behaviours that are unusual in the rest of the population. Commonly observed behaviours include restlessness, short attention span, and difficulty focusing. Many people consider ADHD to be purely negative, but many people with the condition themselves see it quite differently. For instance, ADDA, an self-advocacy group run by people with the condition, argue that ADHD is worthy of being celebrated. Whilst living with ADHD may present challenges, ADDA argues that the condition can in fact have its advantages and should be better thought of as simply a different way of having a mind. This might sound strange at first, but in Michael Phelps there may be an incredible example of this idea in action.

Historically, ADHD was understood as an inability to focus but more modern research suggests that it may in fact be a lack of control on what the brain focuses on. This is why ADHD people often exhibit a trait called ‘Hyperfocus’, where they focus intensely and singly on one thing, often for hours at a time. The theory goes that ADHD people often have a far stronger ability to focus than so called ‘Neurotypicals’ (those without ADHD) do. The problems come when an ADHD person has to focus on one thing when around them are ten or twenty distractions to drag their attention from. Most people have the ability to forcefully draw themselves back to the object of their focus and resist distractions, but without this many ADHD people struggle to stick to one thing long enough to make meaningful progress. With that said, picture child Michael Phelps in a swimming pool. Whilst in a classroom he might struggle to sit and do his work because of all the distractions, in the pool, with nothing to focus on but the water, his mind can intensely focus for hours on end. This allows Phelps to practice far longer and maintain focus far longer than his neurotypical coevals. Becoming a world star athlete requires spending many hours of each day practicing, but it also requires being able to remain attentive to technique even after hours of practice. Its possible that it is because and not in spite of, Phelps’ Disability that he has been able to take on the entire world in his chosen sport, and definitively triumph.

Michael Phelps Video: ADHD and What I would tell my Younger Self

Video Description: Michael Phelps talks to the camera about what he would tell his younger self and what it was like growing up with ADHD. Video has closed captions.

About Theo!

“Hi! My name’s Theo Greiner and I work in the Web and Digital Services Team at Surrey County Council. I’m also on the Autism spectrum and use that experience to write articles on accessibility on behalf of the Council to get people thinking about Accessibility and Disability. I write in hopes of shifting people’s ideas about Disability towards ones that treat Disabled people with the respect and agency they deserve. I hope you enjoy them.”

Not ‘Music’ to Our Ears

Contents

1. Young people’s views on Sia’s casting of Music
2. The portrayal of autism in the media
3. Disability is fluid
4. I’m going to crush you with my love
5. Participation, participation, participation

Young people’s views on Sia’s casting of Music

You may have heard of Sia’s new movie, Music, which was criticised before release for casting a non-autistic actor as a mostly non-verbal, autistic main character.

In the midst of Sia lashing out at criticism on social media, ATLAS members talked about how the casting of Music and the release trailer made them feel.

Famous tweet exchange during backlash around the casting of Sia’s movie, Music.

Many of the young people were disappointed that a potential opportunity for representation of girls with autism was overwritten by ableism:

“It feels as if someone who has not experienced being autistic is mimicking and taking the mick out of struggles we have and there are so many potential actors and actresses which would have been happy to be casted in the movie. There is the idea that Sia was not able to put the right environment for an autistic actress to function when filming but if it’s not working for them and the movie is about autism and disability inclusion and awareness then you should change the environment. I feel it is especially difficult to watch the trailer as a girl with autism seeing a neuro typical girl attempt to portray autism in girls, which unfortunately is a very underrepresented thing in the media and is often not acknowledged as much as autism in boys. I feel that the opportunity to bring about awareness for autism in girls has been crushed by such a horrifically degrading movie of a neuro typical attempting to show you what it’s like to live as an autistic person when they have had no actual experience of it.”

Other young people were torn, because they felt that additional needs and disabilities have been successfully portrayed by actors without additional needs and disabilities elsewhere:

“I think it is difficult. Ideally an autistic character should be played by an autistic actor as this will really help raise awareness, and potentially open up these opportunities to people with additional needs. However, I also think it is not a negative thing a non-autistic actor playing this role, as long as the portrayal is accurate and realistic.

A good example is the American TV show ‘The Good Doctor’. A non autistic actor (Freddie Highmore) plays an autistic savant character in the show, and I know his portrayal of the character has received a lot of praise and has also helped to raise awareness, as well as showing a powerful autistic role model through television, despite the fact that the actor does not have autism.”

Dr. Shaun Murphy from ‘The Good Doctor’

Overall, ATLAS members did not feel that the casting of ‘Music’ was positive.

“Autistic actors are already marginalised and it’s harder for them to get roles. Especially when that autistic character has already been written by non-autistic people, I think it’s disrespectful to not use an autistic actor. It’s unhelpful, and often inaccurate.”

“It’s something that affects me daily and they get to take off their ‘autism mask’ and carry on normally, plus they profit from all of this. It also would be far more accurate with an autistic actor who actually knows the ins and outs of being autistic.”

The portrayal of autism in the media

Sadly, this film does not stand in isolation. The majority of ATLAS members reported that they felt the portrayal of autism in the media was either ‘not very good’ or ‘really terrible’.

There were mixed views around having non-speaking autistic characters in films, however there was a largely positive response to having female characters with autism.

Survey results from Microsoft Forms on the portrayal of Autism in the media.

“I think it’s so important to have the diversity of autism shown in the media. Too many people think it’s straight white boys lining up cars but it’s so much more than that.”

“The way autism is currently represented in the media is not very diverse. Usually cishet white men who like maths. Or it’s demonised. It’s very often talked about from the perspective of ‘autism parents’ rather than autistic people.”

Film is a powerful medium. When used correctly, it can empower and educate people. When somebody sees a film focused on autism, that may be their first exposure to the idea of autism or to an autistic person. This provides an opportunity for people to talk about and approach autism in better ways. Unfortunately, if the film misrepresents people with autism, then the ideas taken from a film could lead to autistic people being viewed and treated in negative ways.

“It could be great it has amazing potential to raise awareness to the struggles of autistic people by using our own experiences and using us for the information rather than charities and companies like Autism Speaks which believe that autism needs a cure. So if the information that the film and the character was based off of was found through talking to autistic people and if they cast an autistic person then the film would have amazing potential to widen people’s knowledge of the autism spectrum and and make the representation of autism in the media more positive.”

Disability is fluid

Clem Bastow beautifully describes Maddie Ziegler’s performance in her Guardian Article:

“there are elements of truth to Ziegler’s performance, but even a stopped clock gives the right time twice a day”

Clem Bastow, in her Guardian Article: Sia’s film Music misrepresents autistic people. It could also do us damage

Disability is fluid:

• two people with the same condition can have completely different experiences of it
• the level of disability someone might experience can vary from day to day.

When people don’t understand the nature of fluidity in disability, it leads to stereotyping and contributes to how disabling society is. People with additional needs and disabilities are actively excluded based on assumptions and passively through it being ignored.

The most important thing to do is listen.

You don’t need to understand how an additional need or disability affects someone to accept it. To believe the individual. To accommodate.

“They’ll decide what your ability is, and then you will be prescribed to that and then you’re not encouraged to go beyond that.”

I’m going to crush you with my love

Perhaps one of the most dangerous misunderstandings the film portrays is the use of prone restraint. Restraint should only be used if there is an immediate danger to that individual or others. When that danger has passed, restraint should stop.

In 2020, the misuse of restraint by law enforcement was brought under further scrutiny after the death of George Floyd. However, restraint is also used in health, care and school environments. At least 20 children have died in the U.S. as a result of restraint since 2001.

ATLAS recently talked about the use of restraint in schools for managing the behaviour of young people with additional needs and disabilities:

“Children and young people shouldn’t be in a position where they are treated like criminals.”

“I believe that restraint should not be used, ever, unless a person is presenting an imminent risk to themselves or someone else. As in, they are not able to stop themselves. Honestly, not even then, usually you can use de-escalation techniques.”

Participation, participation, participation

The film Music being released at the same time as ATLAS is starting to look towards Autism Awareness Week (29th March to 4th April 2021) highlights to me the sheer importance of participation and listening to the voices of people who are experts in their own experience!

How different these events could have been if the voices shared around the release trailer of Music had been properly listened to and acted upon. How different the representation of minorities, vulnerable groups, discriminated groups, those the industry continuously promote stereotypes about could be.

Film can reflect society, but it can also heavily influence it and bring about positive change.

ATLAS members have some advice for anyone reading this who wishes to portray characters with additional needs and disabilities:

“Let people be themselves.”

“Building the character and the movie off of ideas and experiences from people with that additional need and/or disability. Actually taking their experiences and using them in it and it’s easily possible to cast someone as an actor or actress with those additional needs playing the character with those additional needs.”

“They’d have to consult multiple different people with the same disability and not romanticise it or demonise it.”

“I would want them to actually consult with people who have those additional needs and involve them in every step of the process – writing, casting, acting, publishing.”

“Show people how I suffer.”

Written by Sabrina Peters, Additional Needs and Disabilities Participation Officer and edited by Rowan Foster, ATLAS member and Bank worker for the User Voice and Participation Team.