iiinova — where your digital self keeps evolving

Chloe (she/her) @chloeapter.bsky.social · 27/09/2026

I had a call the other day to say that I was accidentally referred to the wrong clinic. I have now been triaged by the correct clinic & the specialist thoracic surgeon wants to see me. But it won't be until around June '27 due to it being a national service with a long waiting list. I am gutted.

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Chloe (she/her) @chloeapter.bsky.social · 22/09/2026

I'm on top of my injectable meds, but struggle to take my 6+ daily oral meds reliably. I've ordered little glass pots with lids to label, decant each medication into, and leave on the kitchen counter. Perhaps in sight = in mind? We'll see!

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Chloe (she/her) @chloeapter.bsky.social · 19/09/2026

If you're ever wondering about the specificity of some NHS booking systems, I have been given a 3:44pm appointment to get my COVID booster & flu jab.

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Chloe (she/her) @chloeapter.bsky.social · 19/09/2026

Content note: suicidality No, I don't want to download the free self-management app "getUBetter" in a futile attempt to self-manage debilitating pain that self-management didn't touch & that landed me under the crisis team for weeks earlier this year because it made me suicidal.

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Chloe (she/her) @chloeapter.bsky.social · 13/09/2026

I recently started a trinket trade box that is housed in the most gorgeous little shop in Brighton. I'm absolutely loving watching/hearing about people doing trades & getting joy from it. www.instagram.com/brighton.tri... If you're local, do pop by & give it a visit.

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Chloe (she/her) @chloeapter.bsky.social · 13/09/2026

Yesterday I turned 29. It feels weird (in the best way possible) to go into my 29th year feeling stable & happy, despite lots of negative stuff happening in my life lately that is beyond my control. I'm determined to hold onto that sense of stability & happiness.

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Chloe (she/her) @chloeapter.bsky.social · 13/09/2026

I've lived in 11 different properties in the last 10 years: some nice, some truly horrible. I feel so lucky that my newest rental - number 11 - is the one where I feel very relaxed, at home, & like it's a little sanctuary for me/my dog/my cat. I'm loving furnishing it dopamine décor style!

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Chloe (she/her) @chloeapter.bsky.social · 10/09/2026

As if I received an NHS appointment letter today where my home address is *over twenty years* out-of-date?!

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Chloe (she/her) @chloeapter.bsky.social · 10/09/2026

For 1.5 years, I’ve had investigations for rib pain. Whenever I said, “I have hEDS - could it be slipping rib syndrome?” I was told, “that doesn't happen". In December, I have an NHS appointment with an out-of-area "slipping rib syndrome specialist" thoracic surgeon. Relief is an understatement.

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Chloe (she/her) @chloeapter.bsky.social · 09/09/2026

Content note: death My grandma died last week. Mere hours after her death, her GP surgery texted her asking for her to rate their service (because they deregistered her once they knew that she had died). Automated patient communication is brilliant - until it isn't & it misses the mark.

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Chloe (she/her) @chloeapter.bsky.social · 31/08/2026

Autistic & ADHD commissioner here who is *very tickled* by commissioners being described as spreadsheet shaggers. Can confirm that I despise spreadsheets.

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

🧵on my experiences of doing mental health lived experience work whilst also being a commissioner.

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

As a patient, I used to harbour intense feelings of resentment towards commissioners. So then I became one… 1/13

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Chloe (she/her) @chloeapter.bsky.social · 16/08/2026

I am lucky that I am able to work & that I have a decently paying job. However, I have no savings. Why? Trichotillomania (stimming by pulling my own hair out). I have spent literally all my would-be savings on wigs, hair extensions, hair systems, hair toppers, etc. Stimming can have a price.

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Chloe (she/her) @chloeapter.bsky.social · 15/08/2026

The specific brand of salacious glee expressed by many in the face of the manufactured, racist, ableist smear campaign against Jason Arday was utterly sickening. I am thinking of Jason Arday, his loved ones, & all those affected by the devastating news of his death.

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Rachel @rrowanolive.bsky.social · 15/08/2026

I could OFF THE TOP OF MY HEAD name 10+ white male academics with long records of one of the below who are still alive and working btw: - serial sexual misconduct - serious data breaches and/or unethical trials - plagiarising female colleagues' research ideas - "scientific" racism and/or eugenics

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Thinking Person's Guide to Autism @thinkingautism.com · 14/08/2026

CN: Death, suicide. Absolutely horrified that autistic professor Jason Arday—who was relentlessly smeared by ableist bullies—was found dead today. Our sincere condolences to his family and loved ones, and shame upon The Telegraph & other outlets who hounded him. www.theguardian.com/uk-news/2026...

theguardian.com

Jason Arday, professor at centre of Cambridge plagiarism row, found dead

Academic was pronounced dead at his home in south London after police called to address after 3pm on Friday

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Chloe (she/her) @chloeapter.bsky.social · 08/08/2026

I am ecstatic to have moved back to Brighton. However, the mental health services here are... well... if you know, you know. I am trying to use this as an incentive to stay well as, historically, I have faced immense iatrogenic harm from services in this city. Anyone in/around Brighton... hi!!

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Michael Birtwhistle @salfordmh.bsky.social · 08/08/2026

Awkward to offer MH centres with unspecified treatment, resourcing or staffing, rather than funding current projects & services, & known gaps e.g. Autism & ADHD assessment & provision. There will be 3 across Greater Manchester's 9 boroughs - separate towns & cities.

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Chloe (she/her) @chloeapter.bsky.social · 09/07/2026

What a joy to co-deliver this session with Rosie from @coprocollective.bsky.social. @sprockethub.bsky.social is a research & innovation hub aiming to transform the delivery of services for children & young people with complex health needs & for those who care for them at key transition points.

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Chloe (she/her) @chloeapter.bsky.social · 05/07/2026

Today is avoidant/restrictive food intake disorder (ARFID) awareness day. As someone with an ARFID diagnosis... ARFID is *not*: - simply fussy eating - being ungrateful - being willfully difficult - a choice - down to bad parenting Please educate yourself before judging.

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Chloe (she/her) @chloeapter.bsky.social · 04/07/2026

Are you a UK-based autistic adult (formally diagnosed or self-identified) who has (like me) been assigned the "challenging behaviour" label or similar? If so, I'd love to hear from you for my @uoppald.bsky.social research, supervised by @drstevenkapp.bsky.social. 📧 Chloe.Apter@myport.ac.uk

How do autistic adults make sense of being assigned the "challenging behaviour" label?
University of Portsmouth

I'm Chloe, a master's student at the University of Portsmouth. I am autistic and I have been assigned the "challenging behaviour" label.

Eligibility:
- Autistic (formally diagnosed or self-identified)
- Age 18+
- UK-based
- You have been assigned the "challenging behaviour" label by staff/clinicians/professionals in an education, health, and/or care context

Participation* involves one of either:
- An online interview (having your camera on or off is acceptable, as is using the chat function or participating via email)
- An in-person interview in London, UK (in a mutually agreed public place anywhere within London, UK (e.g. a café or a library)

All participants will be offered the interview questions in advance and this research has been given ethical approval.

If you are interested in taking part or want more information, please email Chloe.Apter@myport.ac.uk

Supervisor: Dr Steven Kapp

*Please note, there is unfortunately no financial remuneration for participation due to this research being for a master's degree

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MSc Psychology and Learning Disability @uoppald.bsky.social · 01/07/2026

Our MSc teaches progressively on autism, intellectual disability, & neurodivergence. Online: study anywhere, w/ option to attend "live" or study on own. Psych background not needed. Same cost everywhere! £11,200 split over 2 years - competitive for UK, US, AUS, CAN... www.port.ac.uk/study/course...

port.ac.uk

Psychology and Learning Disability

Learn how to make a positive difference in the lives of people with learning disabilities in our 2 year part-time Master's course. Study by distance learning to fit your lifestyle.

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Reposted by Chloe (she/her)

MSc Psychology and Learning Disability @uoppald.bsky.social · 01/07/2026

Happy Disability Pride month! This paper was written partly to help update @drstevenkapp.bsky.social's Neurodiversity Studies module for our @uoppald.bsky.social MSc Psychology and Learning Disability (autism, LD, ND) course - students got first access. onlinelibrary.wiley.com/doi/10.1002/...

onlinelibrary.wiley.com

The neurodiversity movement vs. the medical model of autism

Click on the article title to read more.

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Reposted by Chloe (she/her)

Steven Kapp @drstevenkapp.bsky.social · 23/06/2026

My @uoppald.bsky.social student @chloeapter.bsky.social is recruiting autistic adults in the UK who have been assigned a label like “challenging behaviour” as she has. Would you consider sharing your experience with her or reposting so others may have more opportunity to do so? Thank you.

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Chloe (she/her) @chloeapter.bsky.social · 23/06/2026

Are you a UK-based autistic adult who has - like me - been assigned the "challenging behaviour" label or similar? If so, I'm looking to hear more about your experiences for my @uoppald.bsky.social research. 📧 Chloe.Apter@myport.ac.uk Supervisor: @drstevenkapp.bsky.social

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Chloe (she/her) @chloeapter.bsky.social · 14/06/2026

I used to work supporting autistic adults given the "challenging behaviour" label. Then, I was diagnosed as autistic & given the "challenging behaviour" label myself. Are you a UK-based autistic adult who has received this or a similar label? 📧 Chloe.Apter@myport.ac.uk @drstevenkapp.bsky.social

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Chloe (she/her) @chloeapter.bsky.social · 13/06/2026

Are you a UK-based autistic adult who, like me, has been described as having "challenging behaviour", "behaviour that challenges", "problem behaviour", or "behaviours of concern"? 📧 If so, please email Chloe.Apter@myport.ac.uk to participate in my research. Supervisor: @drstevenkapp.bsky.social

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Chloe (she/her) @chloeapter.bsky.social · 12/06/2026

Are you autistic? Have you been described as having "challenging behaviour", "behaviour that challenges", "problem behaviour", or "behaviours of concern"? If so, I would love to hear about your experiences for my MSc research. 📧 Chloe.Apter@myport.ac.uk Supervisor: @drstevenkapp.bsky.social

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Reposted by Chloe (she/her)

Steven Kapp @drstevenkapp.bsky.social · 11/06/2026

My @uoppald.bsky.social student @chloeapter.bsky.social is seeking more participants for her study on autistic people's experiences of being assigned a label like "challenging behaviour"/"problem behaviour" etc (like her). W/ enough participants, all going well, we hope to publish. Could you repost?

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Chloe (she/her) @chloeapter.bsky.social · 29/05/2026

As someone with a hair loss condition caused by stimming, I have shaved my head many a time & have worn wigs for years. These last few days, I've been wearing a pink/peach/purple wig because if I'm going to have no hair, why not have fun with it? Fellow hair loss folks, I really recommend this!

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Chloe (she/her) @chloeapter.bsky.social · 14/05/2026

It's a sad indictment of NHS mental health services that whilst I was in crisis, my (wonderful!) counselling psychologist had no choice but to discharge me from eating disorder therapy for ARFID "as a strategic move" to get me urgent support from crisis services.

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Reposted by Chloe (she/her)

Asylum Magazine @asylummagazine.bsky.social · 29/04/2026

Please share the advert and support the study Thank you 😊

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Stop Oxevision @stopoxevision.bsky.social · 29/04/2026

A NHS Trust was ordered to pay compensation to a patient over use of Oxevision (LIO) - what does this mean for other Trusts? What does the guidance from NHS England and CQC say about its use? Plus, read our letter to NHSE asking them to take action stopoxevision.com/2026/04/29/t...

stopoxevision.com

Trust ordered to pay compensation to patient over use of Oxevision - Stop Oxevision

An NHS Trust has had to pay out to a patient after she complained to the Ombudsman about the use of Oxevision during her time as an inpatient. This is not unique - all Trusts are at risk of having to ...

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Chloe (she/her) @chloeapter.bsky.social · 29/04/2026

Are you a UK-based autistic adult who has been assigned the "challenging behaviour" label? I am. If you are too, do consider participating in my research. Please email Chloe.Apter@myport.ac.uk to express interest or ask any questions. Supervisor: @drstevenkapp.bsky.social

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Reposted by Chloe (she/her)

Chloe (she/her) @chloeapter.bsky.social · 24/04/2026

How do autistic adults make sense of being assigned the "challenging behaviour" label? *RECRUITING PARTICIPANTS* I am autistic & I have been assigned the "challenging behaviour" label Supervisor: @drstevenkapp.bsky.social Email Chloe.Apter@myport.ac.uk to express interest/for more information

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Chloe (she/her) @chloeapter.bsky.social · 24/04/2026

2 weeks ago, I was discharged from the mental health crisis team after things became unmanageable. Today, I co-facilitated a @coprocollective.bsky.social / National Suicide Prevention Alliance (@rcpsych.bsky.social) workshop: the first of many as it's a 7 year programme! A full circle moment.

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Reposted by Chloe (she/her)

Steven Kapp @drstevenkapp.bsky.social · 24/04/2026

One of my students, @chloeapter.bsky.social, is recruiting autistic adults in the UK who have (like her) been assigned the “challenging behaviour” label for interviews (emails, text chat, video, or London) on their experiences & how they make sense of the term, for her @uoppald.bsky.social MSc. 🙏

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Reposted by Chloe (she/her)

MSc Psychology and Learning Disability @uoppald.bsky.social · 24/04/2026

One of our students, @chloeapter.bsky.social, is recruiting autistic adults in the UK who have (also) been assigned the “challenging behaviour” label for interviews (emails, text chat, video, or London) on their experiences and how they make sense of the term, for her @uoppald.bsky.social MSc. 🙏

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Chloe (she/her) @chloeapter.bsky.social · 24/04/2026

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Chloe (she/her) @chloeapter.bsky.social · 29/03/2026

My mental health trust's website claims that DIALOG+ is a way of "co-producing" a care plan. Well, I guess this is it: the ultimate bastardisation of co-production. As someone who has filled it in more times than I care to remember, nothing about it is co-produced.

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Chloe (she/her) @chloeapter.bsky.social · 28/03/2026

People with mental illness are endlessly frustrated by our experiences being distorted into generic, tickbox, template responses, so much so that they bear no resemblance to what we are actually going through. That's it, that's the post.

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Chloe (she/her) @chloeapter.bsky.social · 28/03/2026

Last week, a mental health professional asked if I receive benefits & when I said "no", she asked me, "how do you have money then?". I told her that I have a job & she looked baffled. Some people with mental illness can work, others cannot. Let's not judge people for either or make assumptions.

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Chloe (she/her) @chloeapter.bsky.social · 28/03/2026

It's upsetting when I think about what having trichotillomania (pulling my own hair out) has cost me financially. I have had to purchase countless wigs, hair toppers, sew-in extension systems, etc. which are usually extortionate & do not last for long. I didn't choose to have this condition.

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MSc Psychology and Learning Disability @uoppald.bsky.social · 27/03/2026

On April 30 at 4 pm (UK time) @drstevenkapp.bsky.social will present a free webinar on his research on neurodiversity with implications for support, @uopcidd.bsky.social, and our online MSc course. Sign up to register and receive a recording even if you cannot attend. www.port.ac.uk/news-events-...

port.ac.uk

Understanding Neurodiversity and Supporting Neurodivergent People - Webinar

Join us online to find out how you can make a positive difference in the lives of people with learning disabilities

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Chloe (she/her) @chloeapter.bsky.social · 22/02/2026

@luckyerica3.bsky.social Hi, hope you're surviving & doing as okay as possible! I wanted to get in touch with you about potentially signposting a specific group of people to @notthevoiduk.bsky.social but saw that you can't see DMs on here - what is the best way for me to contact you with more info?

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Reuters Institute @reutersinstitute.bsky.social · 03/02/2026

How to create news for (and with) people with learning disabilities? A new project by William Kremer looks at a structural blind spot in journalism and an opportunity for public service media to be more inclusive, relevant and useful Click to read reutersinstitute.politics.ox.ac.uk/creating-new...

reutersinstitute.politics.ox.ac.uk

Creating news for (and with) people with learning disabilities

The BBC's William Kremer unpacks how to make news more accessible for people with learning disabilities.

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