If you are the parent of a child that you think may be autistic, you will almost definitely get asked the question: ‘But why would you want to give him or her a label?’
There are different kinds of labels, where autism is concerned – firstly, let’s look at what the word ‘label’ means. People tend to use the word, as in the above example, when they think that being given a clinical diagnosis gives you some kind of stigma, or disadvantage.
Autism – a diagnosis, not a label
However, in our minds, an autism diagnosis is that – a diagnosis, not a label – it means the individual meets a specific, clinically-agreed set of criteria for a specific issue, and this in turn means that the diagnosed individual may have access to support and services. (Yes, neurodiversity advocates do not support the medical model of a ‘diagnosed condition’ – but we can’t get away from the clinical aspect of diagnosis, and the benefits to autistic children of a diagnosis, in terms of support. Hence, we do use the term diagnosis, on the site.)
There are certainly some frustrating connotations surrounding autism, due to a lack of understanding and education, and that is probably where the fear of so-called labelling comes in.
Autism functioning labels
Let’s now look at the often-used functioning labels: ‘high functioning’ and ‘low functioning’. These have been used by parents and clinicians predominantly, to describe an individual on the autistic spectrum.
As an example, traditionally someone with an Asperger’s-type diagnosis would be described as having high functioning autism, and someone who is non-verbal or maybe has intellectual disabilities would have been described as low functioning.
Thankfully these descriptions are clinically ‘out of the window’, now. Diagnostically, autism is autism, and instead of being described as high or low functioning, an autistic individual can be described as having support needs, which are high or low; this is acceptable language.
A patronising badge
If you are the parent of a child that you think may be on the autistic spectrum, you will almost definitely get asked the question: ‘But why would you want to give him or her a label?’
In terms of these functioning labels, if you were the autistic individual who was termed ‘high functioning’, it was like being given some kind of patronising badge: ‘It’s okay, you’re not low functioning; in fact, you’re not far off being normal! There is clearly barely anything wrong with you at all!’ (And this type of ablelist language is still being bandied about, sadly).
But using these labels presented two problems. One: your so-called lower functioning autistic friends and peers were made to feel inferior; and two, as a supposed high functioning Aspie, your own struggles and challenges were not recognised.
In fact, there have been clear divisions within the autistic community, for example with some families of autists with ‘classic’ autism questioning whether someone with Asperger’s was ‘truly’ autistic. The use of autism as a single diagnostic term is surely a step forward, to combat these divisions.
It should be pointed out that high functioning and low functioning are still often used as descriptive terms, and sometimes they need to be used, in context, to help understanding, as they are phrases that people are used to.
However with education, hopefully once people understand that autism is predominantly an issue of processing (and that it’s the co-existing conditions that the autistic may (or may not) have, alongside their autism, that tend to affect their support needs), the functioning labels will die out.
‘Mild’ and ‘severe’ autism
It is worth mentioning the further terms ‘mild’ and ‘severe’, when used to describe autism. These seem to describe high and low functioning autism respectively, and are often used in the media, when describing someone who has autism – notably someone with high support needs e.g. ‘severe autism’. It is our perception that again, ‘severe’ and ‘mild’ are not very helpful terms, and ‘has high support needs’ and ‘has low support needs’ are better phrases to be used. However, if a clinician or parent deems that the phrase ‘severely autistic’ is appropriate for a specific autistic individual, and may get them access to support and services, then who are we to argue?
(One issue to consider is that in cases where ‘severe’ is used to describe an individual’s autism, it seems unlikely that the individual themselves has a say in how they’re being described. Most autists are able to communicate somehow, and if it is not through verbalisation, then there are various communication devices, as well as writing and typing, that would allow the autistic input into the language that’s used to describe them.)
Autism: person first, or identity first?
On that note, there is always division and differing opinions in terms of the language used to describe someone who is autistic. Do we use identity first language, e.g. Jane is autistic, or person first language, e.g. Jane has autism?
There is no correct answer here, and opinion seems to be fairly evenly split – many autistic individuals prefer to say they ‘have’ autism, presumably because they don’t want their autism to define their identity – e.g. it is just a part of their overall make up.
Conversely, other individuals prefer to say that they are autistic, presumably because they believe that their autism affects, informs and defines so many areas of their life, and is their intrinsic being.
The best course of action is often just to ask someone how they like to be described, or even just listen and watch, and you will hear the language they use.
Lydia Brown writes further on the subject at THIS LINK, stating – ‘The theory behind person-first language is that it puts the person before the disability or the condition, and emphasises the value and worth of the individual, by recognising them as a person instead of a condition. When people say “person with autism,” it suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the colour of his or her skin.’
Lydia proposes that what we are saying when we say ‘Person with autism’, [the perceived meaning is] the person would be better off if not autistic, and that it would have been better if he or she had been born Typical. Conversely, and preferably, when we say ‘Autistic person’, we recognise, affirm, and validate an individual’s identity as an autistic person, according to Lydia. This is a view we concur with! However, equally, the English language and our use of it means we do all slip into well-practised phrasing – meaning that here at Spectra.blog, we have used ‘individual with autism’ instead of ‘autistic individual’. It is simply a phrase that slips off the tongue at the beginning of your educational journey. However, we do believe that the identity-first version is preferable.
(The website at THIS LINK also contains more useful links and articles on the subject of person first or identity first language.)
Language used by parents of autistic children
One frustrating element of autistic labelling and language is when parents of autistic children describe the children in a certain way, for example ‘severely autistic’ or ‘low functioning’. It seems to take away some autonomy and identity from the child. (The icing on the cake is when the parent describes themselves as an Autism Parent! Surely they’re just a parent? The autism community tends to find the ‘Autism Parent’ terminology a little patronising, as if the parent is owning the identity, when they don’t necessarily need to.)
Aspie, autist and autie
A couple more terms that fall within the bracket of autism labels and language are Aspie, e.g. someone who has a diagnosis of Asperger Syndrome (or self-identifies), and also Autist or Autie, to describe someone who is on the autistic spectrum.
These are often used by the autistic individual themselves, and are all perfectly acceptable when used descriptively, and not unkindly.
Our belief is that when talking about one’s own autism, or talking about somebody else who is on the autistic spectrum, while it might take a little longer to gain understanding and clarity, avoiding phrases like mild or severe, and NOT using functioning labels, is a more beneficial way to move forward. Even though it may take a little longer to educate people about what is meant!
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences. We’d also love your feedback on our posts!
Read more here –
Autistic badges; do we need “high-functioning” or “low-functioning” labels? (ASD/ASC/ Asperger’s/PDA)
Influencers are individuals with an influence in a sector – so for us, an influencer in the autism sector is someone who (a) is autistic, (b) is a positive role model, (c) speaks positively about autism and (d) has a public profile. Here, we’d like to highlight some individuals whose words we respect, and who are really making a difference to autists worldwide.
Famous autistic individuals – Hannah, Newman, Hopkins, Martin and Messi
There is a handful of fabulously talented and well-respected individuals who are autistic, and have a high-profile. But for us, to be an autism influencer, it isn’t enough just to have a public profile AND be autistic. Yes there are high profile autists out there, all fabulously accomplished and respected people, such as actress Daryl Hannah (“[Growing up] I didn’t fit in anywhere… Anything that involves meeting or talking to more than a couple of people scares the hell out of me,”).
Musician Gary Newman (“[My Asperger’s] has given me a slightly different view of the world and I truly believe it helped get me through some hard times. I’d never wish it away,”).
Oscar-winning actor Sir Anthony Hopkins (“[Yes], I realised early that [my] brain just worked in a way that was more conducive to acting and art than perhaps business. [But] I didn’t know Asperger’s even existed,”).
Road-racer and broadcaster Guy Martin (“[My Asperger’s] is probably what helps me with endurance racing on my mountain bike. I’m not quick but I’m good at getting my head down,”).
British Para-gold-medallist swimmer Jessica-Jane Applegate MBE (“I really struggle with day-to-day things like understanding sets, reading sessions, reading a pace clock and remembering technique,”).
And footballer Lionel Messi, (“When he enters the area, he knows he will score. And he celebrates, with that typical autistic smile, one who has fulfilled his mission and is relieved,” – Roberto Amado, journalist.)
A newer addition to the list is Elon Musk, the CEO of Tesla and SpaceX, who at the time of writing hadn’t disclosed many details about being autistic, other than describing ‘Asperger’s’ – Musk has his critics, but has certainly capitalised on his hyperfocus and unique ways of thinking!
Promoting one’s ‘autisticness’
But these individuals rarely give interviews specifically about being autists, or promote their ‘autisticness’; and why on earth should they? Autism doesn’t define them!! Many autists excel as artistic performers and athletes – perhaps their autism, with its links to attention to detail and preference for repetition and perfectionism, helps them achieve the highest echelons within their field?
A reportedly high number of technology business leaders and senior members of the tech workforce are autistic. (The company SAP, a leader in the field of computer science, has announced its intention to employ more autistic people, forecasting that by 2020, 1% of the current 65,000 SAP employees will be autistic.)
Perhaps autism’s links to problem solving, not getting caught up in emotional distractions and logical decision-making are factors in some autist’s success in their careers?
Or, on the other hand, have these brilliant individuals succeeded in spite of the challenges autism brings? In spite of the social, communicative and sensory issues the neurology entails?
Whichever is the answer, no one in the public eye HAS to be any kind of ambassador or influencer for their neurology; but we’d like to celebrate some that are.
Autism champion Chris Packham CBE
British naturalist and broadcaster Chris Packham was diagnosed with Asperger’s in his forties, and has undoubtedly made a world of difference to autists, thanks to his groundbreaking BBC TV documentary, ‘Asperger’s And Me’: “Chris experiences the world in a very different way, with heightened senses that at times are overwhelming, and a mind that is constantly bouncing from one subject to the next,” the BBC reports). From championing the late Alan Turing in the BBC’s ‘Greatest Person of the 20th Century’ icons project, to being an ambassador for the National Autistic Aociety, Chris has done a great deal to help autists come to terms with their autism, and describes his Asperger’s as a gift.
“[It was] difficult positioning myself to represent the autistic community; because it’s impossible. I am not a typical autistic person – because there isn’t a typical autistic person,” Chris told supporters via his website, after his TV programme was shown. “We [autistic individuals] don’t need a cure, there is nothing wrong with us – we are different,” he added. (Pic: BBC)
Autism champion Anne Hegerty
Briton Anne Hegerty is famous in the UK as a ‘quizzer’, and plays the Governess on TV’s ‘The Chase’. She also entered the jungle on TV’s ‘I’m a celebrity get me out of here’ in 2018, where she won over viewers.
Anne told The National Autistic Society: “[Gaining an autism diagnosis] made me feel better. I feel if people ever say to me ‘I understand you identify as autistic’, actually I don’t do any ‘identifying’ at all. Objectively, I conform to scientific criteria drawn up by people who aren’t me.
I kind of feel that distinction is important. What I do mind a bit is people going around claiming that they are neuro-atypical and I think what they mean is simply they are depressed and anxious, shy and introverted.
It’s perfectly possible to be a shy introvert, who’s not on the spectrum at all.”
On TV’s The Wright Stuff, Anne Hegerty gave possibly the best ever autism quote, when she said “People say you suffer from Asperger’s. No, I have Asperger’s; I suffer from idiots.”
Autism champions Tylan and Carrie Grant
Tylan Grant (formerly Talia, pictured below by Lime Pictures), is a young British actor who got their big break on British TV’s Hollyoaks. Along with mum Carrie, Tylan is a great ambassador for neurodiversity.
Tylan has admitted that autism “Can be a gift and a curse.” Tylan was one of the first autistic actors to land a mainstream British TV role in their part as autist Brooke Hathaway. “I know that I’m not like everyone else,” Tylan Grant told the BBC. “My character Brooke has faced those difficulties and challenges of feeling different. I would have loved to have someone growing up that had autism, that was open about it, that was an actor that I could resonate with.”
Tylan seems to be a very mature young individual, and has taken the pressure of being a role model very well.
Hollyoaks itself is seemingly addressing diversity in earnest, featuring a ‘diversity special’ in February 2019, and boasting an autistic writer on its writing team.
All great news for young autists who are watching the soap, and learning about neurodiversity.
Tylan’s Mum, vocal coach Carrie Grant, has also spoken extensively about neurodiversity, saying on the website she shares with fellow vocal coach David Grant: “I am Mum to four children; three birth, one adopted, three with ADHD, two autistic… all high functioning, so they can appear much of the time to be just like everyone else around them.”
Often in the media, parents of autists are speaking about their children’s issues in a negative light, maybe in connection with a loss of local support services, or the challenges that living in a family with an autist brings. However, the Grants are, as a family, exceptional ambassadors for autism and neurodiversity. “We have encouraged our children to be proud of being their autistic selves. A label is only a problem if you have a problem with the label,” Carrie states. (Pic: carrieanddavidgrant.co.uk)
Autism champion Ethan Fineshriber
Ethan Fineshriber is an American martial artist who has played the Green Ranger on Ninja Kidz TV, and has achieved a second-degree black belt. He was diagnosed as being autistic as a young child, and rose to fame when he won his first world title with a perfect score in the XMA (Extreme Martial Arts) black belt boys’ division of the ATA (American Taekwondo Association).
You can see Ethan’s vlogs, which include brilliant films about autism, on his You Tube page.
Ethan’s Mother Mara says –
“I am one of the proudest mothers on the planet and I take heart in knowing that while Ethan will still always struggle with some things, and will always be a little quirky in some ways, he sincerely has the world at his feet.
He has the willpower and fortitude needed to achieve anything he can dream of,” she told ‘Autism Parenting’ Magazine.
Climate activist Greta Thunberg
The teenage Swede and Nobel Peace Prize nominee has been thrust into the limelight over the last few months, since she initiated a weekly school strike to protest about the lack of Government action to address issues surrounding global climate change. Greta is probably the most famous advocate for autism that the community has ever seen. She’s been on national TV news broadcasts, and in national newspaper articles and TED Talks, and doesn’t shy away from talking about her Asperger’s diagnosis. What’s fascinating is that autism is clearly a driving force behind her passion for redressing climate change. Greta reportedly suffered from depression and issues with eating (not divulged by Greta as an eating disorder, but linked to her depression), aged eleven, in what seems to represent a classic example of autistic burnout. She stopped (for the most part) eating and talking, but then turned her life around. She says her autism helps her ‘see things from outside the box.’
Read more HERE…
Climate activist Greta Thunberg: an inspiration to so many people, and a great ambassador for the #actuallyautistic community
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences. We’d also love your feedback on our posts! Our book ‘Autism from A to Z’ is now widely available – purchase here.