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Rose Matthews (they/them) 🏳️‍🌈

@rosematthews.bsky.social

3.4K followers 2.5K following 1.2K posts

Autistic researcher, author, and illustrator, Durham UK. Autistic people’s experiences of menopause, sex & relationships, work, loss, grief, ageing, palliative care, death, & dying. https://www.rosematthewsresearch.com/ #AcademicSky #AutRes #Skybrarians

www.rosematthewsresearch.com

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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jun 29

#Thread
An important part of reclaiming my life after a very late #Autism diagnosis has involved rekindling my #research career which had burned out years before.
Peer reviewed papers representing all 3 phases of the Bridging the Silos #Autistic #menopause study have now been published.
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A colourful illustration depicting the three phases of the Bridging the Silos Autistic Menopause Study

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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · 13d

Same for me, being up on the hills, or on the beach is the same!

Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · 18d

#Arthritis is making walking challenging so I’m grateful for accessible routes like this riverside path. My love of nature encourages me to keep mobile and helps with the pain.
#disability
#nature

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Reposted by Rose Matthews (they/them) 🏳️‍🌈

Lawrence (Larry) Mróz @drmroz.bsky.social · 21d

Citizen Science as an Approach for Engaging Underrepresented Communities in Health Research to Generate Research Questions and Priorities - Journal of Clinical Epidemiology www.jclinepi.com/article/S089...

Citizen Science as an Approach for Engaging Underrepresented Communities in Health Research to Generate Research Questions and Priorities

Engaging patients and public in health research ensures results remain relevant and responsive to community needs. However, meaningful engagement with underrepresented communities remains challenging,...

www.jclinepi.com

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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · 27d

Referred to a specialist by my GP yesterday, an appointment has come through in less than 2 weeks time. When the NHS works well it is brilliant. So many #Autistic people face barriers that prevent them from accessing diagnosis and treatment. My experience shows simple changes can transform outcomes.

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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · 27d

It’s disappointing not to be in Dublin this week but the medical treatment I’ve been having over the last few days and yesterday’s urgent referral to a specialist is more than adequate compensation.
I’ll find another way to share my presentation on positive experiences of #Autistic #ageing.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · 27d

There’s no more battling with early morning phone calls.
Communication barriers don’t impede clear explanation.
Consultations go more smoothly with advance information.
My practice trains new GPs so this is a wonderful opportunity to alert them to #healthcare issues affecting #Autistic people.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · 27d

I’m thriving because I’ve finally getting accessible medical care. Conditions that were missed, misdiagnosed, or mistreated for years are being attended to, transforming my quality of life.
I submit online requests to my new primary care practice. These are triaged by a GP and I get a text reply.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · 27d

#Thread
Flourishing in unexpected ways.
I should have been at #AEC2025 in Dublin yesterday delivering a multimedia presentation on ageing as an #Autistic person.
Instead I was being diagnosed with my 5th Autoimmune condition. I’ve had medical appointments 4 days this week, but I’m thriving!
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · 29d

Access to appropriate services can be life-changing, sometimes life-saving.
As an older, disabled #Autistic person who is increasingly reliant on #health and #SocialCare it’s encouraging to see contextual factors that hinder/support #neuro-affirming practice being explored.
#Autism

National Autism Implementation Team @naitscotland.bsky.social · 29d

journals.sagepub.com/doi/10.1177/...
open access article published today 🤩 A realist evaluation considering contextual factors that hinder/support
#neuro-affirming practice in adult health and social care services @rcpsych.bsky.social @basw-uk.bsky.social @rcot.bsky.social @bpsofficial.bsky.social

Contextual factors influencing neuro-affirming practice: Identifying what helps or hinders implementation in health and social care - Anna Gray, Donald Maciver, Eleanor Curnow, Lorna Johnston, Marion ...

There has been limited research to date into contextual factors hindering or supporting the successful implementation of neuro-affirming practice in support for...

journals.sagepub.com

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Reposted by Rose Matthews (they/them) 🏳️‍🌈

Irene Tuffrey-Wijne @tuffrey-wijne.com · Sep 1

Be one of the first to order. Launching today!

(UK only - other countries can still freely download and print at home)

Order link is in this short video. Please share!

youtu.be/VrntRIJCdXY?...

@andreabruun.bsky.social @mariecurieuk.bsky.social

FREE end of life care planning toolkit sent to your door

YouTube video by Victoria & Stuart Project

youtu.be

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Reposted by Rose Matthews (they/them) 🏳️‍🌈

Ben Potts @ben-potts.co.uk · Aug 12

We made it into the Independent!
“NHS ‘needs to do more to support autistic people”

www.independent.co.uk/news/uk/home...

#AutRes #AutismResearch #ADHDResearch #ADHD #Autism

A screenshot of the “Independent” website. If you would like the article in text form let me know and I’ll copy and paste it. I don’t know if advert-laden website are very screen reader friendly. Anyway, the URL is https://www.independent.co.uk/news/uk/home-news/nhs-adhd-hospitals-government-research-b2805190.html#

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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 22

I thought of an #OccupationalTherapist I worked when I was a social worker.
In one crisis situation, as well as focusing on the person’s immediate physical needs, she planted bulbs in their garden.
After lying dormant over winter, strong green shoots broke through.
We’re alive.
We survived.
10/end

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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 22

I felt compassionate concern and care. It was the polar opposite of my recent #DWP #PIP assessment.
In a situation that had begun to feel hopeless I started to see faint glimmers of light.
No pressure.
No judgement.
Just a belief that I’d get through this if I had access to the right supports.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 22

There’s more.
Accurate recording. Prompt implementation of planned actions.
Checking back to see if aids and adaptations had improved things.
Importantly, I didn’t have to explain #Autism.
The #OT understood my sensory issues, executive function challenges, social isolation, and spiky profile.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 22

Structure with flexibility.
Active listening.
Close observation of the minutiae of how I move, how I feel, who I am.
Picking up on things, like non-binary identity.
Bridging the gap between physical and mental health.
Considering family and social factors.
Creative problem solving.
Use of self.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 22

Admitting what you are struggling with can be difficult when you’ve always been fiercely independent.
Exposing personal aspects of your life to a stranger’s gaze requires trust.
I’ve tried to unpick why my OT assessment went so well.
It was partly predictability.
Making arrangements. Explaining.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 22

I worked very closely with #OccupationalTherapists as a mental health social worker, so I knew their approach was practical, holistic, and person-centred.
The way we function in our day to day lives is never purely physical. It’s also emotional, psychological, spiritual, and uniquely individual.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 22

If there’s a silver lining it’s that I’ve finally learned to ask for help, and not to give up when help isn’t forthcoming but to keep on asking.
That was how I came to have an #OccupationalTherapy assessment recently.
#OT was a career of choice when I graduated but I went in different directions.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 22

Some of us don’t do well on standard NHS treatment of Levothyroxine monotherapy.
But getting Liothyronine involves a battle it’s hard to find energy for. Hypothyroidism can cause cognitive challenges and emotional dysregulation. #PseudoDementia.
It’s a lonely journey through unknown territory.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 22

One of the effects of low thyroid function is depression.
While it helps to know why I feel this way having all the joy sucked out of life wrecks my motivation.
Chronic illness is exhausting for other people too. There’s no quick fix. Titration of replacement hormones takes months, even years.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 22

#Thread
In praise of #OccupationalTherapy #OT.
I’ve been experiencing exhaustion like never before.
It’s because of autoimmune thyroid disease, along with painful arthritis, exacerbated by the exhaustion of being #Autistic in an unaccommodating world, and effortful listening due to hearing loss.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 18

We were surrounded by ripe wild raspberries, more abundant than they’ve ever been.
Every season has its delights and this was a delicious surprise.
Walking is painful and
difficult at the moment, so it really felt like the natural world was encouraging and supporting me.
#SensoryJoy
#Autistic
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 18

From that moment on the walk felt auspicious.
A little further along I spotted a bright flash of blue.
A tiny Jay’s feather was resting on the grass.
I found one once before, but I gave it away.
Feather collections are a family thing and I knew my grandchild would love it as much as I did.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 18

When I was out walking today the same type of butterfly landed right in front of me.
It rested for a moment on the parched warm path.
I know it is fanciful to imagine it was the same one, but it definitely could have been!
Magical things tend to happen when nature has free rein.
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Rose Matthews (they/them) 🏳️‍🌈 @rosematthews.bsky.social · Jul 18

After a little gentle shepherding, out it flew through the lobby. I stood and watched it catch the breeze and soar skywards towards the trees.
Some other good things happened too, but liberating this butterfly was a special moment.
I know what it feels like to be trapped with no escape route.
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