BBC’s ‘The A Word’ and Person-First Language

There were two different things I could write here, and both of them deserve their own blog post. The first is the new Fifty Fathoms/BBC drama The A Word, which hopes to be inspirational, educational and emotive. The second is the use of person-first language, and why I, as an autistic person, disagree with it.

However, while I would love to talk about these things separately (and possibly will in the future, once all six episodes of The A Word have aired and I have collected enough coherent information about person-first language), there was a slight overlap of these topics following the first episode.

What I can say about The A Word so far is that I really enjoyed the episode, and that I really related to 5-year-old Joe and his love of music. As someone who sings for fun, comfort and everything in between, learns lyrics and collects trivia about my favourite musicians like some people collect trading cards, I genuinely feel for that kid. As a perspective on autism, I feel like it’s a pretty fair representation of part of the spectrum. Of course, there is never a way of representing all of the spectrum in one character, but the portrayal of Joe in the first episode managed to avoid many of the exaggerated stereotypes and faults that plague the majority of autistic characters in the media.

Now, I’m going to switch topic for a moment. I promise it’ll link in, but this is an important perspective for anyone who wants or claims to be considerate of disability rights. Almost all of the disabled people (autistic or otherwise) I’ve ever spoken to, online or in real life, condemn the use of person-first language. The topic of person-first versus identity-first language is something of a buzz topic among such communities, which can be easily accessed on social media. These are key phrases in disabled communities and amongst disability rights activists, but they’re jargon in comparison to other disability-related terms floating around the mainstream, so I’ll give a short glossary of what they mean.

Person-first language, also called ‘people-first language’, is the act of referring to disabled people as ‘people with disabilities’, in this specific case ‘people with autism’. The aim of using person-first language is to reduce stigma and dehumanisation of disabled people, though it has faced a lot of criticism since it became the standard.

Master status is a sociological term which, while I haven’t mentioned it so far, is an important aspect of disability advocacy and rights. It is defined as the primary characteristic (therefore visual or otherwise obvious) on which someone is judged, and can refer to race, gender, disability, and more. A master status is dehumanising because it ignores people’s personalities and reduces their identity down to a single, often stereotyped or stigmatised, characteristic.

Identity-first language is the opposite of person-first language, and refers to the use of the phrase ‘disabled people’ and any derivatives. Identity-first language can be controversial because in the past some of these words have been used as slurs and insults, though the majority of disabled people I’ve ever seen discussing matter prefer this phrasing to the awkward alternative.

Much of the criticism of person-first language comes from the fact that isn’t achieving what it wanted to. Many people point out that the phrasing is similar to how people with illnesses are referred to, implying that disabilities are always the same as illnesses, problems that need to be fixed. The impact of this is that it ignores the significant impact that being disabled can have on a person’s identity and personality, effectively stripping them of their identity.

A second criticism is that person-first language suggests that it is ensuring that people ‘see the individual before the disability’. This, in turn, implies that people cannot be seen as complete humans if others think of them as disabled, which is a harmful rhetoric in many ways. Person-first language contradicts its original purpose by dehumanising people in this manner, which encourages others to think the same way if it used by authority figures such as diagnosticians and psychiatrists.

Lastly, person-first language is intent on separating the person from the disability, which many people would protest against. Disability activists and advocates would argue that their disability forms a major part of their identity and has impacted the way they think and perceive the world. This is particularly prevalent amongst developmentally disabled people, as their disability very literally affects the way they view the world. That is one of the most common reasons why people claim to dislike the use of such phrasing, because while attempting to reduce stigma it only ends up avoiding the disability by not discussing it.

As much as I liked the first episode of The A Word, there was one moment that felt like a slap in the face. During the somewhat rushed diagnostic process, Joe’s mother asked if her son was autistic, with the psychiatrist responding vehemently that she “would never describe any child as [autistic]”. While I saw a few people defending and praising this line on Twitter, the manner in which it was delivered seemed aggressively negative.

The cold tone used by the character seemed hostile to the point of combative, and it felt as if it was invading the safe-spaces autistic people have made for the themselves by so openly attacking their viewpoint. With reviews floating around which praise the show for its representation, I cannot get it out of my head that this woman thought so ill of the autistic community and their views. I also cannot put this down to under-researching, as it appears from the rest of the narrative that the writers were clearly thorough in their research and understanding of autism- I therefore assume they have the same amount research about the autistic community and the views of autistic people themselves.

However, there were a few people online who shared my view in context of the programme, and many more who share my view in general. In the worst case scenario, the use of person-first language implies an allegiance to the harmful organisation Autism Speaks (which again, I may talk more on in the future) and at best is merely a set-up so that they can discuss the issue in a future episode. Given that the organisation who made the show liked my tweet on the topic, I’m hopeful that it’s going in the better direction.

I’d still recommend watching the show, as long as you keep this in mind. Aside from that one issue, I feel like the show is going to be a well-written discussion of autism and a good source of awareness and acceptance throughout its run, and I hope it lives up to those good reviews and expectations.

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Altschmerz

I don’t have anything interesting to write about.

People are going to tell me that I’m seventeen, I’m not supposed to have anything to write about yet. According to the adults and the people who write the papers, seventeen-year-olds aren’t supposed to have had experiences, aren’t supposed to have exciting lives. Tell that to everyone else on this godforsaken island, with their parties and their plane tickets, their paychecks and partners-in-crime. They all have interesting things to write about, if they wanted to.

And it’s probably just my perfectionism talking, but I don’t have that. I can write all I want about political events and that one time I tried public speaking, but it’s not going to become the next Great American Novel.

Hell, I’m not even American.

That same old disgusting disappointment is creeping back into my head. With every deleted first sentence, its claws dig a little deeper. I can feel the anxiety beginning to creep up my arms as I begin to write. It’s gripped my shoulders, crawling into my veins and making a home for itself resting heavy on my chest. Until recently, I’d never believed literary descriptions of anxiety but I can feel it now, tightening my muscles and lingering on every deep breath. My writing is slow, drawn out and I can already hear the doubt in my mind as to whether what I’ve put down on paper is good. So I’m putting this feeling down on paper instead.

Or, metaphorical paper. I struggle sometimes to write in notebooks because my pen can’t keep up with my brain, a trislander trying to keep pace with a concorde. The lack of physical writing doesn’t stop me from buying notebooks like I buy sketchbooks, like some people buy packs of hairpins. Obsessively, needlessly, purely for the comfort of having them there if I need them. Because each one is slightly different from my other notebooks

The anxiety subsides as I continue, stops crawling up my neck and retreats down to my tension in my forearms and those perpetual deep breaths. I breathe oddly, when I pay attention to it, particularly when I’m nervous. I inhale deeply, quickly, my shoulders and chest rising as it reaches a peak of before I exhale and my stature slumps like dropped cloth. If I try consciously to regulate this cycle, it worsens. If I’m focusing on it, every peak is a cliff-edge where I might never step back. Might never breathe again. I can feel my heartbeat in my neck, now.

I can’t deal with this here, nothing to do but wait until the next distraction. Being alone all day is not good for me. I find productivity impossible without the motivation of others and end up boring myself by doing nothing all day. I am the personification of destructive passivity. This is beginning to sound like those zeitgeist novels I idolise (all those books I don’t the concentration to read). If there’s one thing I could write about, it’s how to spirit of our generation is anxiety and pretentious introspection. This entire thing, this blog post of sprawling train-of-thought, falls into that category as well.

I’ve been told that the best advice for writers is to write what you know. This is what I know: fear, frustration, holding myself to standards I’m aware are too high but can’t bring myself to lower.

I guess what I mean with all this is ‘altschmerz’. Old pain. Weariness of the same old problems, if I can claim that at seventeen. How tired I am of feeling like nothing I write is good enough, how nothing is interesting because how can I understand, let alone fictionalise things that I haven’t experienced.

This is an excuse for not writing as much I should. And also an apology to myself for not writing as much as I would like to.

Psychotherapist Nathaniel Branden famously said that “The first step towards change is awareness. The second is acceptance.”

I’d like to think I’m getting there.
(This post is a mess. At some point, I’ll clean it up and edit it a bit. For now, it works best as a mess.)

Speaking at TEDxYouth: Being Autistic in Mainstream Education

A little over a month ago, I was approached with an opportunity.

Let me say this right now: I am not a public speaker. I have never before given a speech of my own writing to an audience, so this was a bit of a leap in the dark on my part. I was given the opportunity to give a talk at our first local TEDx Youth event, set up by the Guernsey Youth Forum and the Dandelion Project. At first, I declined, as I couldn’t think of anything to talk about, certainly nothing as inspirational and influential as everyone else. Perhaps two weeks later, I had a sudden strike of unexpected revelation. Then, at our next meeting, I put forward my idea:

Being Autistic in Mainstream Education.

There’s a lot to say about the TEDxYouth@StPeterPort, and it was such a fantastic experience to be surrounded by such prolific people. I can say with confidence that it is just as, if not more, humbling to be surrounded by such inspiring kids than surrounded by influential adults.  It was also fantastic to see such an important theme running throughout the evening, something Emily Yates (www.emilyroseyates.co.uk, speaking about Undressing Disability) summed up perfectly as “increasing inclusivity”. Every speech given throughout the evening included a new group of people. As I said on Twitter, we were creating an open space.

The other talks given live throughout the evening were:

For anyone online, or anyone who couldn’t make it to the event, I decided to write an accompanying article to my speech. I knew, obviously, that there is much more to say than what I could fit into a single talk, so this is not a transcript. There are elements of my speech in this, but I view it more as an elaboration on the points I made at TEDxYouth@StPeterPort.

(Also, this is a formal apology for how awful my haircut looked back in February)

 

According to the official NHS statistic, more than 1 in a 100 people are the UK are autistic. Out of the 200 or so people in this room, I’d like to find the other one.

Of course, that’s not how statistics work. Not only that, but they’re always changing. In the US? 1 in 68 children, official stats say. A more recent estimate suggests that it could be 1 in 45. This, of course, doesn’t account for all the people who go undiagnosed, and that’s probably much more than you think. There are people diagnosed at private practises, who choose to keep it off of their medical record. Only recently is more research being done into late diagnosis, particularly late diagnosis in females. It’s been said before that because autism presents itself so differently across the spectrum, many people don’t even realise that they’re affected by it. So this is my autism:

I love music. In this way, I am like most teenagers.

I cannot stop thinking about music. In that way, I am not like most other teenagers.

A little bit more insight into my head: I struggle with school. I cannot stand direct sunlight or bright white rooms, and this time last year I was getting migraines three times a week. I have difficulty following vague instructions, so ‘clean your room’ or ‘make dinner’ aren’t much help to me, and I cannot cope with changes in a routine or unplanned events. I dislike heat, and cold, and foods I don’t know, and textures that are strange. I cannot start things. When I do, I stop them. I do not enjoy large groups of people or parties or crowds and I cannot stop thinking about music.

But there’s another side to this. I’m a liar. I understand sarcasm, and I can look for subtext. I never had a developmental delay; in fact, I had a developmental advantage. I have always been able to speak, and though it can be difficult, I can navigate a conversation with relative ease. I may have a tendency to dominate conversations in a rambling tangent if it hits the right nerve, but I’ve been told it comes as ‘eccentric’ rather than ‘abnormal’. I mentioned that I am a liar and that’s true, a direct contrast with the stereotypical idea of autism, and that is how I survive. I run on set conversational structures, whether they be true or not, and I stick to them.  

So how is autism diagnosed nowadays? It really depends on where you live, and who you see. The majority of psychiatrists and diagnosticians in the US and Western Europe use the guidelines laid out in the DSM-V. The DSM-V is a diagnostic and classification tool more formally known as the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. The Fifth Edition was introduced in 2013, and has some significant changes from previous iterations. One of the most prominent changes, and the change which is most relevant to this discussion, is the grouping of the Autism Spectrum Disorders.

Previously known by their individual names: ‘classic’ autism, Asperger’s Syndrome, Rett Syndrome, childhood disintegrative disorder and Pervasive Developmental Disorder Not Otherwise Specified, shortened to PDD-NOS; the DSM-V merges the diagnosis into one umbrella term: Autism Spectrum Disorder. The umbrella term became the term. There are many reasons behind this, but the most influential factor was the lack of separation between the different diagnoses. Where does ‘classic’ autism begin and Asperger’s Syndrome end? What is the true difference between Asperger’s and PDD-NOS? There was no line that could be drawn, and so the separation was dissolved.

Another reason behind this decision was the expectations and harmful stereotypes assigned to the different disorders. If somebody had ‘classic’ autism, they were told from the moment they were diagnosed that would never be independent, never have their own career, and likely never be able to speak. You can see how this is an issue. There were similar issues with the other end of the spectrum. If you had Asperger’s, you were practically fine, you didn’t really have a disability in the eyes of society, and you weren’t allowed to express any frustration with the situation you were in. These stereotypes and expectations also lead to the dropping of functioning labels by the majority of the autistic community. The dissolving of separate diagnoses strengthened the reliance on functioning labels, which is similarly problematic.

While the functioning labels, high functioning and low functioning, have been in use long before the DSM-V. The functioning labels are collectively shunned by the autistic community, often found hanging about the #actuallyautistic tags on various social media platforms, partially due to their connections with eugenics-supporting agencies and harmful organisations. Though, like the separate diagnoses, a functioning label is not an accurate depiction of a whole person. Based on one or two immeasurable characteristics, how could people be classified into such crude, basic groups?

One of the biggest problems with such labels is the decisions that are made based upon them. Whether it be that they are placed in historically abusive therapy, institutionalised or enrolled in an additional needs support school, such decisions are important, and life-changing. So important that they should not be based on a label somebody was unfairly assigned.

The education debate is a debate as old as the discovery of autism itself- mainstream education or separate schools? Like any debate, there are pros and cons to both. The pros of separate schooling, whether it be a state-funded additional needs school or private, are easy to see. Such establishments can be expected to have better-equipped staff, sensory friendly environments, tailored teaching methods, and less bullying. Or at least, less bullying based on disability. The cons, however, are equally clear: there is no equality of opportunity, a separate school may not offer the same qualifications or open the same career paths as a mainstream facility. The separation itself creates stigma, lets disability become a master status because if people don’t know any peers with additional needs, then what do they have to rely on for their knowledge about it? The media, the stereotypes, that one PSHCE lesson they had back in Year Seven? Exactly.

The decision, for many people, was never theirs. You can probably guess from the title of my talk that I am a mainstream education kid. I am a product of that environment. Being diagnosed at sixteen took that choice away from my family and I, and while it is highly unlikely that I would have chosen or been enrolled at a separate school, the option might have made us think a little more.

I have struggled with school since I started secondary school, which is obvious now even if I didn’t realise it at the time. The most obvious example of this early struggle is that I didn’t do any history homework for that entire year, because I knew my teacher wouldn’t notice. I still got the highest homework grade for that subject in my report. Homework was always the biggest problem. I couldn’t do it, or I simply didn’t do it without knowing why it was so hard to make myself sit down and write. I suffered anxiety when faced with school the next day, and I would go to some extreme lengths to get out of it. I mentioned those migraines, and how I had them three times a week? Well, even when I stopped having them, I said that I did. I had doctors’ appointments for lethargy, prescribed preventatives for migraines I wasn’t getting.

My attendance, predictably, suffered greatly. Even on the days I would go into school, or the ones where I sat crying in the car because my mum had forced me out of bed and into my uniform, I would skip lessons by sitting in the sick. It was so easy, too easy, to convince the receptionists. “I’ve got another migraine, and I’ve taken my painkillers so I should go off soon, but I could I just lay down in the dark for a while?” The answer was always yes. Sometimes, they would offer to call my mum and get me picked up.

Towards the end of Year Eleven, only a month or so before my GCSE exams, I was referred to the school nurse, and subsequently to CAMHS. It was an initiative to up our attendance before the crucial final stretch of the year. Following a few discussions about my migraines and my skin, I did a couple of questionnaires about ASD which were sent to the people down at CAMHS. After a two-hour test in the summer, quite like the 11+ with verbal reasoning and non-verbal reasoning as well as comprehension and memory, I received my diagnosis.

Since my diagnosis last August, I have worked with the Additional Needs Coordinator at my school to help make things a little easier for myself. Still, there’s a shortage of resources. Understandable, we live on a small island. Almost all of the sensory equipment, such as weighted blankets, are kept in a separate establishment and require multiple referrals to gain access to. Not only this, but a lack of awareness within both society and specifically in schools is an issue not often addressed.

Speaking to people in the social media tag #actuallyautistic has taught me many things. Firstly, that the community itself is always very open and welcoming. Secondly, that several others share my perspective. There are others who were diagnosed in their late teens, others who struggled through secondary school without knowing why. There’s a central theme in the stories people have told me: a feeling of exclusion. You’re in a mainstream school, and you don’t fit in. Then again, there’s nowhere you’d fit better.

I was told I was a genius. I was told that I was a future straight-a student.

Well, that didn’t happen.

I know I’m not the only one not living up to those expectations. I know I’m not the only one in my school. Not the only one in my year group, even. Maybe even not the only one in this room.

The motivation, the point behind this whole speech, is awareness. How much do you know about autism? From the perspective of autistic people? I’m asking you to go home and look it up, because there’s more than what I can tell you.

Not only awareness, though. We have enough blue lights and documentaries. We’ve had enough of vaccine scaremongering and heartwarming sob-stories. We want acceptance.

And I had a choice, whether or not I told people I’m autistic and there are people here who don’t know that about me yet, but I’m not going to keep quiet. We want acceptance because we are here. In your schools, and in your workplaces, in your youth groups and in your events.

And we are not being invisible anymore.