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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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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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There are more people like me on TV than ever before – so why hasn’t my life changed?

From Meryl Williams, a finalist on everyone’s new favourite reality show The Traitors, to Kiruna Stammel entering the GP practice on daytime soap Doctors. Annabelle Davis, daughter of Warwick, joining the cast of Hollyoaks, to Ellie Simmonds waltzing up a storm on Strictly and Francesca Mills, dry-humoured as ever, on The Witcher: Blood Origin.

It’s been an incredible couple of months for people with dwarfism in TV. 

There are more people that look like me on TV, showcasing disabled joy and awesomeness, than ever in my living memory. Whether acting, dancing, or reality tv contestant-ing, we’re seeing them in the fullness of who they are. We get to discover and enjoy their personalities, their talents and – like with all humans – the things they’re not so good at too. 


My wheelchair was supposed to give me freedom, but inaccessible transport means I am still restricted. 

Picture the scene. You’re on a bus. You’ve got your headphones on and you’re in your own little world, enjoying the trip. The bus slows and pulls up to a bus stop where a wheelchair user is waiting to board. How do you feel? 

If you’re me, your heart drops.

Because I’m already sitting, in my wheelchair, occupying the only spot that a wheelchair user can use, and I know that they are going to get denied access to the bus because I’m already there. The guilt is horrific.


My life as a disabled digital nomad

I am a disabled digital nomad travelling the world on a full-time and (hopefully) permanent basis. 

After the combined power of a mental health crisis and the coronavirus pandemic decimated my income, I worked seven-day weeks in an effort to achieve a career milestone of becoming a full-time editor before turning 30. 

Then, when an opportunity arose to fulfil that dream, I realised that signing up for a 9 to 5 and a stable income had become my worst nightmare. The concept felt confining instead of freeing. So, I turned my attention to another one that I shelved long ago: being a digital nomad. 


Kaylea Titford’s neglect was appalling- yet media focused on her weight

Trigger warning: this piece contains descriptions of death of a disabled person by neglect and fatphobia in the media surrounding the Kaylea Titford case. Please take care and only read if you feel able.

When I first read about the death of Kaylea Titford, I was shocked: both by the deep neglect she experienced—culminating in her passing at her home in Wales in October 2020, aged just 16—and at how misleading the headlines were.

Parents killed girl by letting her become obese” Announced BBC News, The Evening standard declared “Father of obese teenager found guilty of manslaughter by gross negligence.” 

Kaylea was a disabled girl born with spina bifida and hydrocephalus who lived and died in appalling conditions because her parents—enabled by a society that consistently devalues disabled lives—chose not to prioritise her care. 

Yet the mainstream media’s primary concern seemed to be that Kaylea was ‘obese’. 


The Media’s Constant Cry That ADHD Isn’t Real is Deliberately Ableist Misinformation

White middle-aged men gatekeeping ADHD is not new, but the floods seem to have opened over the past week and every outlet is suddenly crying out about this “epidemic”.

Except it’s not an epidemic, is it? Because ADHD isn’t an illness, and it’s not true that everyone is suddenly qualifying for a diagnosis.

Most of these articles talk about ADHD being the latest “trendy mental health condition” – but it’s not a mental health condition, showing from the very first sentence that they have no idea. 

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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.

Box-Ticking Exercise Columns opinion

Christina Applegate and the Power of Disabled Hollywood Stars

Christina Applegate has rarely been off our screens throughout the different eras of her life and ours. After emerging in commercials and a soap opera as a child, she played a teenager on the successful and long-running American sitcom Married with Children. Then, she won an Emmy for her guest appearance on Friends. Other starring roles have included the Anchorman films.  

Over several years, as she recounts it, the tingling and numbness she was experiencing worsened. Finally, she was diagnosed during filming for another successful TV show, Dead to Me, that captured another era of life. She had Multiple Sclerosis.