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Why it’s time to retire low and high-functionig autism levels

When my older sister was 13, she got a job at a fish-and-chip shop. Watching her cash tills and serve customers, I was in awe at her self-composure and sparkling confidence. Though just two years older, she seemed a decade ahead of me in every way, and I often wondered what was wrong with me.  I knew that even in five years, I wouldn’t be able to hold a regular job like her or my teenage classmates. 

Ten years later, I still felt like the anxious, sensitive child I’d always been. Though I’d been Dux of my high school and had moved from my regional hometown to the city to attend university, by age 21 I still couldn’t make friends or attend events without having a panic attack.

If I was so smart, why couldn’t I function like everyone around me? Two years into my undergraduate degree, I decided it was time to prove myself: I was going to get a casual job, just like everyone else. Applying to be a waitress at a local cafe, I didn’t tell anyone in case it went badly. 

It went badly. Not even an hour into the unpaid trial shift, I was sent home. I wasn’t handling it, the owner told me. I looked anxious and wasn’t smiling enough, she said. Though I’d tried hard to hide my distress, the constant barage of noise, odours and movement in the cafe was disorienting. I was too flustered to remember the table numbers, let alone the orders being spoken to me through the warped onslaught of other voices, scraping chairs, and clanging kitchenware.

The owner was right – I couldn’t handle it, and it was devastating.

I cried with shame when I got home, and resolved myself once again to study hard with the aim of securing an office job one day. But even as I entered the professional workforce in my mid-20s, I was horrified to keep finding myself in situations that, logically and in hindsight, were “beneath” me.

There were the students and colleagues who bullied me. There were the friendships I could never maintain, and the romantic relationships I could never initiate. Worst of all, there were the people I let take advantage of me, like the street-seller who stopped me to comment on my severe eczema, and in the space of 20 minutes convinced me to buy a dozen cosmetic skincare products worth $700.

Of course, the products didn’t work. Alone at home, deeply ashamed and coming to the realisation I’d drained my student bank account, I hid the products in the top cupboard of my sharehouse bedroom. I’m smart, I told myself. So why do these things keep happening? 

I was 28 when I was finally diagnosed as autistic. Suddenly, my life made sense: the anxiety, the suicidal depression, the imploded relationships, the loneliness, the sensory overwhelm.

Confronting yet comforting, everything I’d always struggled with was right there, written in black and white.

But my relief at my autism diagnosis was short-lived.

Initially, I hoped that with a diagnosis would come support and eventually some relief from my life-long social and psychological suffering. Almost two years on, my quest for relief has been self-directed, lonely, and mostly unsuccessful.  

Looking back, I can’t help but wonder if things would be different had my autism not been categorised. Level 1, says my report. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), doctors classify autism as either Level 1, 2 or 3, categories that also dictate how much support an autistic person needs.

In reality though these “levels”, along with the labels “low functioning” and “high functioning”, serve to help neurotypical people more than autistic people, namely by defining who they think needs support. 

These categories also play into the common myth that the autism spectrum is linear – ranging from “not very autistic” (“high functioning”, Level 1) to “very autistic” (“low functioning”, Level 3).

The reality is autistic traits fall into an outward-sprawling graph, like a spider-web or colour wheel. So while I have above-average intelligence, poor social skills, high sensory sensitivity, and significant mental health issues, another autistic person may present in complete opposition to me.

To be clear, I’m not saying that Level 2 or 3 autistics do not need significant assistance. Instead, I’m arguing that “high functioning” autistics, particularly adults, are often left to fend for ourselves.

Whether we’re denied assistance or even a diagnosis, we’re just not autistic enough to warrant support from the services apparently designed to help us. 

Sadly, I know I’m not alone. Online, I’ve found a diverse community of fellow autistics, many of whom, like me, were diagnosed later in life and categorised as “Level 1”. For many of us, above-average intelligence, professional achievements, or even hyper-empathy have meant we’re labelled “high functioning”.

Tellingly, us “high functioning” autistics are also often high-masking and high-suffering – lonely, burnt out, and both mentally and physically ill. Yet because we have a career or partner, we are perceived to be “functional”.

Take this line from my own diagnostic report, for example:

“Elena reported no academic or intellectual challenges, in fact her intelligence has been used to offset other areas of difficulty.”

Though my report also states I require support “managing the demands of life and relationships”, the overall theme seemed to come down to the assessors’ opinion that I have “used logic to overcome many of the deficits associated with autism”.

While this may be true in some areas of my life, I can’t help but feel this intellect-trumps-all sentiment erases the psychological, social and physical suffering of “high functioning” autistics, making it harder for us to secure support services. 

So how do we as a society support all autistic people?

It’s time to move on from the damaging “low” and “high functioning” labels, and to ditch the myth of the linear autistic spectrum.

Importantly, doctors and therapists need to rethink autistic people’s percieved functional capacities.

Rather than assigning support based only on the DSM-5’s categories, priority should be given to an individual’s self-reported needs and social history.

Instead assessor need to actually ASK autistic people about our experiences without making assumptions and advocating with us, not for us.

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Why chronic pain needs to be classified as a disability

15.5 million people in England live with chronic pain. Almost one-third of people with long-term pain experience high-impact chronic pain, which means it hinders their ability to participate in daily activities and enjoy life.

However, even though this condition is disabling, the government does not count it as a disability—and that should change.

Although there are various yardsticks to measure disability against, commonly assessed barriers are those of environment, attitude and institution.

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ON HIATUS: Statement on the future of The Unwritten

Updated 28/08/23: Please note, we are on hiatus and emails will not be checked. Our Twitter is also not monitored so please follow editor Rachel on Twitter if you want to keep in touch.

I wanted to update you all on the future of The Unwritten. As you all know I started The Unwritten to give disabled people the space to tell our own authentic stories in a way mainstream media just wasn’t allowing. And though it’s only been a short time, I truly believe we’ve made waves.

However, as my career grows and my conditions worsen, I’ve had to make an incredibly hard decision.

From August, The Unwritten will be on a 6 months hiatus, during which time I will be assessing its and my own direction. 

In the meantime, we have a raft of content still to get out and will be publishing everything we’ve commissioned between now and June. To allow this to happen, we will not be accepting any more pitches. 

We will also still ensure that we pay all writers what they deserve. With this in mind, I’d love it if supporters still did so until July, to ensure all invoices can be paid asap. I want to stress that this decision wasn’t made because of a lack of funding, but because I need to listen to my own body. 

I’m so proud of the voices we’ve elevated and the content we’ve published. Since our launch in December 2020, we’ve published over 200 pieces on so many different aspects of disabled life, paying nearly 100 disabled writers over £3,000. 

The Unwritten from its inception has been a crowdfunded publication and while we’re so grateful for everything donated, this has meant I’ve never been able to pay editors, though I’m very lucky and thankful that Cath, Caroline and Hannah have donated their time. 

This has however meant the majority of running the site has been down to me – with the amazing Laura as inbox gremlin these last couple of months.

While I try to publish as much as I can, I am just one person and a disabled one at that. This is why, for the sake of my mental and physical health, I’ve made the decision to pause The Unwritten. This hasn’t been a decision I’ve made lightly, and I feel tremendously guilty about doing so, but I think now is the right time.

Thank you so much to all of our writers, supporters and readers who have always been there. This isn’t goodbye, it’s see you in a little while.

Rachel Charlton-Dailey

Founder and Editor-in-Chief

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Box Ticking exercise: Non-disabled people will never get the importance of disabled Barbies

Box-Ticking Exercise is a monthly(-ish) column by Melissa Parker in which she dissects ableism and the portrayal of disability in tv, film and media. Being M, this is of course all done with her pen as a scalpel.

It was a moment of catharsis in an aisle filled with garish colours. An emotional pull, a toy that looked a little like me—a Barbie in a wheelchair—in plastic flesh, my eyes filled with tears —I could almost see my once chubby little fingers reaching for it.  

It wasn’t until days later that I faced a jarring reality that often hits home profoundly and unexpectedly—a friend I told about this little piece of plastic wish fulfilment looked utterly unmoved. She expressed confusion about such an emotional response.  

Non-disabled people can never fully understand it — never fully get it.  

They are the standard; the impossibly thin blonde looked just enough like them. They didn’t have to mush together, remove parts or create haphazard DIY mobility aids forged out of household objects to see themselves more fully represented. They didn’t have to learn that their body was fundamentally not quite right.  

I remember being taken to a toy store as a child — an enchanting experience children remember for the rest of their lives. For disabled children, it’s where self-doubt and self-recrimination can begin.  

On top of internalising messages about cartoonish and autonomically unattainable bodies — perfectly symmetrical faces, pert noses and flawless skin — the early lessons of ableism and racism also begin to seep.  

At least we are beginning to break down ideas about beauty, skin tone, body shapes, hair types and disabilities.  

As Hollie-Anne Brooks states: “As a plus size woman, I was never represented in dolls growing up, but now, as an adult, I had all these options. It helped me figure out that I was absolutely perfect the way I am, and I hope future toys do that for other children too.”  

Shalida A. Askanazi narrates her experience: “I was so happy to see it, I actually cried. Growing up, there was a wheelchair Barbie, but I only ever remember her being white.”  

She points out that disabled black children and adults more deeply experience the problem, “people who are disabled have such a hard time seeing themselves already, but it’s even harder when you’re black.”  

She conveys the emotions many disabled children internalise from their earliest interactions, ingrained within their earliest memories. “Not seeing myself in toys as a child definitely left me with low self-esteem. I always felt like I was in the zoo from people staring but also ignored by the lack of representation.”  

For Shalida, one way of healing her “inner child” was buying the stuff she couldn’t afford as a child or that didn’t exist. “There’s no age limit on toys. That person isn’t disabled, so they can’t relate to not having a doll that looks like them. For us, it’s a huge deal and rightfully so.”  

Barbie may be dismissed as a relic of a different age, but she remains an iconic children’s toy reflecting many different generations. Thus, she is a mirror of us over time — even as that mirror has reflected some uneasy truths.  

These toys — handled with love and rough hands by their young owners are a start. A disabled Barbie on a shelf is an imperfect beginning. Disabled children need these normalised formative experiences to see themselves fully fleshed out and understand their history.  

It’s a method of introducing their cultural heritage, a pride in their disabled bodies. They should symbolise a new time when disabled children, even in their earliest moments, don’t learn the half-truths of history.  

This means reading more books, being open to discussing complex topics and using age-appropriate language to discuss ableism. In addition, there must continue to be a conscious effort to include representation and diversity in anything offered to all our children.  

As Hollie-Anne mentions about her understanding of disability history, “I knew nothing, and it was only when I became disabled in my 20s that I started to understand. I got bought a wheelchair Barbie, I think, by my mum, not long after I became a wheelchair user, and it helped me unpick so much.”  

The experience has encouraged her to think about her future children and how they will learn about disabilities — through their earliest interactions with toys.  

From the “cripple Suffragette” to the wheelchair user Black Panther, disability history is so often neglected. Disabled children have been taught, passively or by design in our schools, that history was made solely by the non-disabled and that every right we ever gained was not taken by force, crafted by a disabled hand, but bestowed on us by non-disabled pity.  

Non-disabled people don’t understand it because they have seen themselves fully reflected in every aspect of life.    

They will never fully get it—will never truly understand.

But that’s because it’s been about them—their standard, their reflection—for so long, and we need to build the same foundations for disabled children.

These Barbies are little pieces of plastic wish fulfilment — an imperfect beginning, but the beginning that’s so important in shaping how disabled kids see themselves.

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Accessing support meant confronting my own internalised ableism

Any disabled person will tell you about the myriad of barriers that there are to accessing disability support, especially when you aren’t obviously, visibly disabled. But what happens when the biggest barrier you face is your own, internalised ableism?

I was diagnosed with myalgic encephalopathy (ME), systemic lupus erythematosus (SLE), and fibromyalgia at 17 years old, and have identified as disabled for over 10 years now. Recently, Autism and ADHD joined my list of comorbid conditions, and I realised that I’ve been disabled for my whole life. Throughout most of 2022, with my SLE and fibromyalgia flaring, and facing a severe case of Autistic burnout, I was spending between $400 and $1000 AUD per month on my health, in a country with a “public health system”. 

Considering that my worsening physical and mental condition meant that I was only able to work part-time, this expense was financially crippling. I decided, with a gentle nudge from my psychologist, to apply for funding through Australia’s National Disability Insurance Scheme (NDIS) to cover the therapies I needed to support my function as a disabled, neurodivergent woman in an ableist, neurotypical world. 

For those of you unfamiliar with the NDIS, it is a scheme rolled out by the Australian Government in 2013 to assist disabled people to access funding for supports that are not covered by our public health system, such as assisted living technology, occupational therapy, support workers, and capacity building psychology for Autistic people. 

Accessing the NDIS is usually a notoriously lengthy and difficult process, and there’s strict inclusion criteria and rules around what you can spend your funding on. 

Despite having identified as disabled for over 10 years, when my psychologist and I first started talking about accessing NDIS funding to pay for my therapies, I was surprised to realise that I didn’t feel “disabled enough” to access the support I needed.

The application form that she sent me sat unopened in my email inbox for weeks while I grappled internally with this voice that told me “you’re not disabled enough to access this funding” and “you don’t deserve this support”. Somehow, I couldn’t comprehend my own disability. I couldn’t fathom how a 29-year-old woman who has two university degrees and a professional job could be eligible for support funding. 

Even though I know that I struggle with things that nondisabled people do not. Even though I can’t remember ever having a pain-free day in my life, and even though I know that most people don’t have to spend up to $1000 a month to be able to work 3 days a week, and then lie in bed exhausted and unable to function for the next 4. 

I’ve spent the last 12 years of my life advocating for invisible illnesses to be recognised as disabilities by the media, the government and the general public, and yet I sat paralysed, unable to recognise it in myself, in order to complete my application. 

The pervasive societal ableism that I’ve fought so hard against for my entire adult life reared it’s ugly head in my subconscious, and it took weeks, lots of therapy, and financial desperation for me to fight it enough to complete my application, and submit it. 

Then came my planning meeting. An hour and a half sitting in a room with an NDIS employee, talking about my goals and support needs. Leading into this appointment, I had so much anxiety. What if she doesn’t think I’m disabled enough? What if she doesn’t believe me when I say I struggle to do my washing and clean my toilet, but I want to go back to university to study medicine? How do I make her realise how much I struggle, when my whole life, I’ve been trained to trick people into thinking I’m capable, and coping?

I’ve used my intelligence as a mask for most of my life, and the vulnerability required to drop the mask in this setting, and admit that I’m not okay and I need help to function was so difficult to muster. 

I had to seek coaching from my psychologist, and friends who have accessed NDIS support prior to my appointment. They told me to “talk about my worst days”, and coached me on the language to use to convey my struggles accurately. They reminded me not to minimise my struggles, the way I’m so used to doing. 

In the end, the planning meeting went well, and I was granted some funding. It’s not enough to cover all my therapies, so I’m going to need to appeal once I’ve had functional assessments done.

I can’t help but to wonder, would I have been granted more funding if I wasn’t fighting my internalised ableism throughout the whole process?

 But at least now, I’ve done the self-work I needed to in order to feel worthy of support. The support I’m able to access are going to better my life, and going forward, as I appeal for more funding, the barriers I will face will be external and system-based barriers. I no longer feel unworthy of support. 

I am “disabled enough”. It just sucks knowing that I needed the external validation of an organisation to feel that way, due to how ableism has infiltrated my brain.

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Employers need to do more than just celebrate neurodiversity

This week is neurodiversity celebration week, a time when neurodiverse people show that we’re proud of who we are. It’s estimated that 1 in 7 people in the UK has a neurodiverse condition.

The idea of the week in essence is a great thing, but like most awareness weeks, without action it amounts to nothing.

I fully believe neurodiversity is a thing to be celebrated, without mine I wouldn’t be half as creative, straight-talking or able to chat to anyone about anything – all great skills for a freelance writer. 

However being neurodiverse in the workplace comes with challenges that neurotypical people (who don’t have a neurodiverse condition) don’t even have to think about.

For example, I have auditory processing issues, meaning my brain takes a minute to catch up to the information I’ve just been told and I often wont take in information first time. So if I’m being told something important I need it in writing and meetings or phone calls will often need to be recorded or summarised after. 

I also struggle with timekeeping and I’m nearly always late to every single thing I’m supposed to be at. I’ve tried not being late but inevitably it doesn’t work so instead I set alarms and manage people’s expectations. I’ve found for the most part people are understanding, but we need to change the narrative around lateness and the idea that it means not caring.

MP Emma Lewel-Buck previously told The Mirror that when she was running for office she found it difficult to access vital data because the membership list spreadsheet format was inaccessible to her “Campaigning was taking me twice as long because the format just didn’t function in the way that I do”

There are simple fixes to all of these things that employers can do to make life easier for neurodivergent people, but the fact they are still seen as “special adjustments” are holding disabled and neurodiverse people back. 

The problem here is that it falls to the individual neurodivergent person to inform and educate their employer or educator and many don’t have the confidence or feel like they can safely do that. 

There’s also the mental load this takes that many of us just don’t have the capacity for. If these actions are already in place for everyone, those of us who feel we can’t speak up can still be supported .

There’s also the issue with how neurodivergent people are still treated in society, autism is a punchline or synonym for unfeeling, and ADHD is constantly treated like it’s not real. Lesser known conditions like dyspraxia are still given the outdated label of clumsiness, which is then made fun of and often not associated with neurological issues such as problems with planning or processing.

While many employers and education settings now almost boast and how inclusive they are, the fact so many disabled and neurodivergent people are out of work speaks for itself

If we truly want neurodiversity to be celebrated, as it should be, we need to give neurodivergent people something to celebrate and the chance to thrive at work.

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ADHD is not my superpower

I was diagnosed with ADHD in 2018.  I was pretty sure I had it long before seeking a diagnosis and yet, it took me over a year to even decide to seek a referral for assessment.  

The reason for this, I now realise, was internalised ableism-I was worried what people might think of me (that I was “less able”) or that I might not be taken seriously because I had done “pretty well” academically.

When I did eventually receive my diagnosis, an ADHD advocate I knew shared a delighted smile and said “Congratulations!” I thought it was a strange reaction.  She explained that “some of the most creative and passionate people” she knew had ADHD. 

At the time, it made me feel better because I do think of myself as creative and passionate.

Since then, however, I have come across a lot of “toxic positivity” mainly from neurotypical people around ADHD, with the trope being that it makes those of us who have it creative, passionate, out-of-the-box thinkers and is, therefore a “superpower”. 

Whilst most people I know who have ADHD diagnoses are fiercely passionate and creative, the pressure to accept this narrative has the very real effect of erasing the difficulties we experience. 

Yes, sometimes I am creative. Yes, if I find the right moral issue or something really ignites my interest, I can become incredibly passionate. Yes, I do have “out there”, interesting ideas. 

These aspects of my personality are great, but there are times when I physically can’t action any of my creative ideas, wash the dishes or even send an email because the reward-based action centre in my brain isn’t ignited. 

These are not rare incidents; they are daily struggles that can lead to total inertia and extremely low self-esteem. I miss important deadlines, always owe money at the library for overdue books and often remember a task I haven’t completed just as I’m heading out the door, or going to bed.

The toxic positivity “ADHD is my superpower” culture that exists as a sub-culture of the ADHD community that’s potentially steeped in ableism, stemming from the “inspirational disabled person” narrative makes addressing the daily challenges of living with ADHD very difficult.  

The difficulties of living with ADHD are compounded by the stigma that surrounds taking medication.  I was recently collecting my ADHD medication from the pharmacy and the technician asked the duty pharmacist to check everything over before she handed it to me. 

The pharmacist looked at me, then at the medication and then said “to her”: “that terrifies me.” I knew what he meant, and, unfortunately, rather than react to his ignorant and highly unprofessional comment, I was stunned into silence. He meant that because ADHD medication is stimulant-bases he was “terrified” of people taking it and becoming addicts.

This is a popular opinion in general society.  Certain media outlets perpetuate this myth and a quick internet search on ADHD will reveal opinions that ADHD medication is “basically a street drug”, and that it’s “brain altering”. 

These narratives are false.  Far from being addictive, I often forget to take my medication, because I have ADHD, which impairs my executive function and working memory. 

Taking ADHD medication isn’t for everyone, but it has been hugely beneficial for me. It enables me to focus more easily on day-to-day tasks and quiets my brain, which means that I have less anxious energy. 

I’m generally very outspoken about my ADHD and a very strong advocate for those who have ADHD and the adaptations and understanding we may need, but I still find talking about taking medication for it really difficult, because of the stigma that surrounds it.

With ADHD diagnoses on the rise, what we need is an honest discussion about the realities of living with ADHD and the benefits (to many) of taking medication for the management of symptoms.  

We need content that acknowledges that living with ADHD is really difficult and that doesn’t compound the shame we feel by stigmatising medication, which is an essential management tool for many. 

We need to call out the ADHD as a superpower narrative – because I’m definitely not a superhero.

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In Praise of Melamine Picnicware

Vital vessels quickly turn into a disabled person’s worst enemy. 

It is easy to be drawn into the centuries-long battle all disabled people have faced. Earthenware, ceramic, and even the supposedly lighter glass and china. They litter the shop shelves both virtual and real. They draw you in with pretty shapes and quirky designs. 

Silent foes, waiting until they’ve lulled you into a false sense of security to finally start their attack. 

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Editors Notes: IPSO Told me Nobody Complains About the UK Media’s Ableism- so Let’s Prove Them Wrong

One of my goals this year is to make a lasting change in the reporting of disability in the media. So when I secured a meeting with the head of standards and regulation at the Independent Press Standards Organisation (IPSO) about guidelines for reporting disability I thought I was one step closer. Oh, how wrong I was.

IPSO regulates some of the biggest papers in the UK, including Daily Mail, The Sun, The Times, The Telegraph, and Metro – some of the worst offenders in the last decade of casual and downright overt ableism.

But instead of discussing potentially coming up with guidance, I was told by the biggest print media regulator in the UK that there was no remit for this.

Because apparently, nobody complains about the way the media writes about disabled people in this country.

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More than a Cookbook: The Autism-Friendly Cookbook by Lydia Wilkins

Disclaimer: The Autism-Friendly Cookbook was kindly sent to Marie to review, this has not influenced her views.

When I told someone I was reviewing this book, their first question was “how is a cookbook for autistic people different to a cookbook for neurotypical people?”. 

I had to admit that I honestly wasn’t sure. I know how my physical disability and ADHD affect me in the kitchen but being someone who didn’t realise they are autistic until recently, I hadn’t really thought about how my autism impacted my ability to follow a recipe and cook a meal. 

So I approached Lydia’s book hoping not only to discover some tasty food, but also hoping to learn more about my autistic self. 

I soon discovered Lydia’s book is more than a cookbook.