Rose Matthews
@NortherlyRose
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Autistic activist, writer, researcher, & creative thinker. #GenderFluid #Neuroqueer . @Autism_R_and_D @SensoryJoy (they/them)
UK
Joined July 2009
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Pinned Tweet
#Thread
The significance of sunflowers.
My peg in the cloakroom at nursery school had a bright yellow flower. It was a predictable anchor in a sea of chaos for this tiny
#Autistic
child at a time when
#autism
was only just beginning to be realised, but not in children like me.
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I was just reading an (otherwise very good) article which described students with neurocognitive or cognitive conditions as “high needs”.
It suddenly struck me that we don’t talk about how ‘needy’ neurotypical people can be, because their needs are somehow seen as ‘normative’.
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Take the need for eye contact. This is something I can easily do without.
But your typical neurotypical person craves it so much that they want to have it when it’s dangerous.
Like making eye contact during a conversation with someone who’s driving a car.
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These are just a few examples that came to mind. There are many more.
From a neurodivergent perspective it’s clear how much ‘hard work’ neurotypical people can be.
And yet we’re always the ones who are described as having ‘high needs’.
Being different is seen as difficult.
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Something autistic people often get accused of is “over sharing”. This is a curious example of a positive characteristic (openness) being pathologised. “Over sharing” is generally presented as someone failing to understand and comply with appropriate communication boundaries.
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And then there’s the fact that many typical neurotypical people struggle with being on their own.
They crave the company of other people so much they follow you around the house, to avoid being left alone.
This kind of intense neediness can quickly become utterly exhausting.
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#Thread
The problem with police officers, by someone who used to be one.
Policing needs people who don’t like conflict, and want to keep the peace.
But many people join the police for the power; to be part of a force, not a service.
#police
#policing
#ReclaimTheseStreets
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Not only that but meetings (at least in pre-Covid days) have to be topped and tailed with inconsequential chit-chat for the sake of neurotypical participants.
The prospect of getting straight down to business, and being deprived of a chance to gossip, is very unwelcome indeed.
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The biggest question that my autism diagnosis has answered is “why am I always so tired?”
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Something else neurotypical people struggle to do without is ‘stroking’ from social compliments.
If these aren’t immediately forthcoming, they may try to elicit them, either by asking indirect questions, or by making self-deprecatory comments in the hope of being contradicted.
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In situations where something’s going seriously wrong, a lot of neurotypical people won’t speak up about it.
Or if they do what they say may be so carefully couched in caveats that things end up going off the rails while the point of their message is still being disentangled.
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Boris Johnson is incompetent and out of control.
We’re the ones who are paying the price.
#notmovingon
#BorisJohnsonMustGo
#DominicCummnings
#dominiccumnings
#LiaisonCommittee
#DailyBriefings
Boris Johnson refused to allow scientific advisers to talk about Dominic Cummings during today's coronavirus briefing
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The rejection of rational, logical argument as the framework for decision making often results in discussions going on for far longer than is necessary.
And some very bad decisions indeed can be made when the facts of the matter end up getting over-ridden by ‘fear or favour’.
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🧵
#Thread
Since discovering I’m
#ActuallyAutistic
I’ve realised energy, empathy and emotion aren’t infinite.
If I keep exceeding my limits I’ll meltdown, shutdown, or
#burnout
.
Self-awareness, boundaries and regulation are vitally important to wellbeing, and survival.
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I’ve just said goodbye to my best friend.
Three years was too short a time to be together but sometimes the right decision is the hardest one.
We had 7 glorious weeks going out on walks together this summer.
After a long consultation with the vet, Izzy went to sleep in our arms.
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We’d all be much healthier if we shared information more freely. Neurotypical culture often relies on building edifices for the ego and suppressing what’s real, or flawed, or true. People end up comparing themselves with artifices, and feeling miserable when they fall short.
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#Thread
To someone realising they may be autistic as an adult, and feeling overwhelmed by it.
Please don’t be alarmed. In spite of nearly everything you read about autism being negative there are many positive aspects.
And, most importantly, it’s part of what makes you ‘you’.
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If you’re
#ActuallyAutistic
you get told in childhood:
“Honesty is the best policy.”
Then you spend the rest of your life discovering that terms and conditions apply.
#Neurodivergent
#AllAutistics
#honesty
#autistic
#autism
#truth
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Some food for my local
#foodbank
to prevent people from going hungry.
Meanwhile the prime minister pontificates about how to eat scones.
#ChildPoverty
#Austerity
#GE19
#GE2019
#GTTO
#Poverty
#BorisTheCoward
#ThursdayThoughts
#BorisJohnsonLies
#VoteLabour
@UKLabour
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Something like “over sharing” that is seen as an autistic deficit can quite easily be turned on its head. Are autistic people too honest and open or has society lost touch with the truth? I “over share” quite consciously. I consider what I say. I don’t just blurt things out.
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#Thread
Reflections on a very late in life
#autism
#diagnosis
.
Six years ago I realised that I might be
#Autistic
.
I am 64 now.
Here are some thoughts about what has happened since then.
#ageing
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@MissBethanEJohn
It takes real courage to walk away, especially after investing so much already.
I had to do this several times.
Like you I regret some of the things I allowed to be said and done to me.
Toxic environments destroy our hearts and souls.
No job is worth that.
You’re free now.
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It was sad that something I saw as a cause for wonderment and celebration had to be concealed because it was connected with human biology. As
#autistic
people we learn that “over sharing” all kinds of things: insights, objections, facts, truths, can lead to us being shamed.
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Three years ago I’d just discovered I was
#ActuallyAutistic
at the age of nearly 59.
This didn’t come about because autism was suddenly ‘fashionable’.
It was the result of not being able to function any more.
Being autistic, but unrecognised as such, had exacted a heavy toll.
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#Thread
Adjusting to knowing that I’m autistic.
How my life has changed over the last three years, and some of the challenges that remain.
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“Over sharing” isn’t something innate I can’t over ride. As a social worker I had no difficulty maintaining appropriate professional boundaries. And there are things about my life I don’t share on Twitter because they concern other people and would intrude on their privacy.
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@katieharr1988
Following the accident reporting procedure in the health and safety policy.
You know in a new job where you have to sign to say you’ve read all the policies, and will follow them?
It turns out you’re not supposed to (but no one tells you that).
🤷
#ActuallyAutistic
#AllAutistics
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Today I’m celebrating being in
#employment
.
Later on I’ll be working in a delightfully satisfying part-time role where my managers and colleagues know that I’m
#Autistic
and I felt safe enough to mention it in my job
#application
and at
#interview
.
#NeurodiversityCelebrationWeek
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The first time I remember being conscious of “over sharing” was when my periods started at the age of 13. My mother’s friend had called round for coffee, and I mentioned this, excitedly. Her reaction was embarrassment. Clearly this information was not supposed to be shared.
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Sent to someone upset by their autism diagnostic report:
Even though my autism assessment was 3 years ago I’ve never quite got over reading my diagnostic report.
A big part of the problem is that the report was written to satisfy a set of criteria which were inherently negative.
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#VirtualDogWalk
Jake has been getting extra cuddles this week. His special person (the elderly neighbour who adopted him from the dog shelter) died on Saturday.
My neighbour used to stride up onto the fields with Jake at his heels.
They were in the garden from dawn til dusk.
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Imagine how brilliant it would be if, when we realised we were autistic, we could just focus on coming to terms with this ourselves, and helping our immediate family and friends to understand, rather than having to educate the whole world.
#ActuallyAutistic
#AllAutistics
#autism
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Do I trust the police now?
No, not really.
And it’s not just on the basis of what happened yesterday, or in the last couple of weeks.
I know there are decent, honourable police officers.
But many are not.
Know your rights, be vigilant, stay safe.
#ClaphamCommon
#police
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Like many people I’ve been bullied, abused and put at risk in other ways, so I take this into account when I decide what to share. Information posted publicly can be read by people who don’t have my best interests at heart, they could even weaponise it and use it against me.
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There are risks associated with “under sharing” too of course. If we don’t tell other people what’s going on we may be more vulnerable to abuse. Bullying often starts with small acts of unpleasantness. Not speaking up or objecting to these may result in things escalating.
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When I look back at my life I’m not surprised I ended up falling apart, I’m amazed I kept going so long.
Better information & understanding about
#autism
will prevent future generations from having to reach crisis point before they get a chance to be assessed.
#ActuallyAutistic
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At certain times in my life I wasn’t able to share much at all, because the work I did required me to be invisible on social media. In other jobs I had to be careful not to say anything that might be seen to compromise official policy. I like being free to say what I want now.
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Abusers and bullies often hope we will keep quiet due to fear, misplaced guilt, or shame. Our silence protects them. And getting disapproval for “over sharing” could be equated with autistic people being coerced into having “quiet hands”. A form of subjugation and oppression.
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We’re not saying goodbye as we scatter Izzy’s ashes.
We’re setting her free so she can run along the sand and splash through the water for eternity.
Darling dog, force of nature, we’ll remember you forever.
Thank you for all the joy, love and fun you brought to our lives.
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I only discovered I was
#ActuallyAutistic
aged 58.
I spent nearly six decades as an ‘undercover autistic’.
How on earth did that happen?
*Thread*
#autism
#autistic
#LateDiagnosis
#AutisticWomen
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#Thread
Becoming myself eventually.
Reflections on a very late in life
#autism
#diagnosis
.
It’s almost 5 years since I began a consultation which changed the course of my life.
I sensed this was a watershed moment, but I didn’t expect it to transform my identity so completely.
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#Thread
Why I’m proud to be autistic.
I’m proud to be autistic because it means I’ve rejected the narrow, prejudiced, pejorative definition of autism most people subscribe to.
#AutisticRights
#AutisticPrideDay
#AutismAcceptance
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At secondary
#school
I stopped going to the dining hall at lunchtime.
This was assumed to be an
#eating
problem but it was actually a noise, overcrowding and smell problem, with added stress from social demands.
We need to fix
#environments
and expectations, not
#Autistic
people.
‘…..society should focus on creating a peaceful eating environment instead of focusing on finding ways to treat autistic aloneness as if aloneness in autism is caused by problems inside of the autistic individual’
Also check out
@kmahlerkmahler
👏
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‘If you are wondering whether you identify as autistic, spend time amongst autistic people, online and offline. If you notice you relate to these people much better than to others, if they make you feel safe, and if they understand you, you have arrived.’
#AllAutistics
#autism
The autistic community allows people to discover their autistic identity in a safe environment that introduces them to autistic peers, rather than to the negative projections of non-autistic people .
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#Thread
Let me tell you about Izzy the Border Terrier, and why we were so close.
I don’t find it easy to make or keep friends, but our bond was so strong only death could come between us.
I remember the first moment I ever saw Izzy. The look in her eyes was strangely familiar.
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It’s a bit early in the day to start swearing but
#MattHancock
is on
#BBCBreakfast
with delusional optimism about public willingness to follow
#TrackAndTrace
to the letter. Trust has been very seriously undermined. When will the government grasp this?
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#Thread
Things that made me think I couldn’t possible be autistic...
...until I got my autism diagnosis at the age of 58.
#ActuallyAutistic
#LateDiagnosis
#AllAutistics
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It’s very distressing when people suggest that Donald Trump, who is a self-obsessed, racist, sexist, unprincipled megalomaniac, might be
#autistic
. Believe me,
#narcissism
is nothing like
#autism
#ActuallyAutistic
#AllAutistics
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I was nearly 59 before I found out I was autistic.
I cried for the bewildered toddler, child, teenager, woman I’d been.
#ActuallyAutistic
#LateDiagnosis
#AllAutistics
#autism
On average, autistic girls are diagnosed later than boys, and often after severe mental health problems. We don't want to see them failed by the system time and time again. We are actively working to lower the age of diagnosis for girls, because autistic girls deserve better.
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When I was a police officer my protective equipment was a hard hat, a handbag sized truncheon and a bullet proof clipboard.
If you dress people up in paramilitary style equipment their behaviour changes.
And you change the type of people who are attracted to doing the job.
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@MichaelRosenYes
This is ridiculous!
When I was a police officer I sometimes got deployed to direct the traffic at posh weddings.
The fact I was there as a glorified parking attendant didn’t mean I ignored offences like driving under the influence of alcohol being committed right under my nose!
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If you’re wondering if you might be
#autistic
but ruling it out because not all of the criteria apply read on. Like many late diagnosed
#ActuallyAutistic
people
#autism
wasn’t seen as a possibility because I seemed to communicate well, was married and had a successful career.
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#Thread
Last night I made a pledge.
The crisis in mental health services is no secret. Lives have been lost and ruined. Family and friends left bereft with grief.
We’re told repeatedly lessons have been learnt. But have they?
It’s time to make good trouble about this.
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All autistic adults were once autistic children, and autistic children grow up to be autistic adults.
These simple facts aren’t always recognised.
Late diagnosed autistics often have airbrushed childhoods.
While autistic children are frequently expected to remain ‘forever young’.
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I’ve no doubt even worse things were going on behind my back. That’s one of the reasons I stayed.
Maybe I was stopping bad things from happening, some of the time, simply by being there.
They knew I’d report them.
But swimming against the tide for too long is exhausting.
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I got my late in life
#autism
diagnosis after a very challenging
#perimenopause
.
For the last 2.5 years I’ve been researching
#Autistic
experiences of
#menopause
with
@AutMenopause
and I’m delighted that our first paper has been published by
@journalautism
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Don’t believe anyone who says you can’t have a long, happy marriage if you happen to be autistic.
We’re celebrating our 13th wedding anniversary and more than 15 years together today.
#autism
#AllAutistics
#AutisticPride
#ActuallyAutistic
#AutismAcceptance
#AutismAcceptanceMonth
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This is the 6th
#WorldAutismDay
since my
#autism
diagnosis. I don’t just accept being
#Autistic
I appreciate and enjoy it, in spite of the enduring stigma, prejudice, discrimination, ableism and inequalities.
We’ve come a long way, there’s so much further to go.
#AutismAcceptance
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It isn’t a betrayal of my love for Izzy that I’m searching for another dog so soon after losing her.
It is a testament to how much she meant to me.
I am lost without her.
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Male officers watched my house, running visitors’ details through the PNC.
They didn’t just harass colleagues.
If an attractive woman was spotted other patrols would be encouraged to “take a look”.
Policing was used as an excuse to ogle women.
Predatory sexual behaviour.
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When I was 24 I was asked why I was doing menial jobs after graduating with a first class degree.
I chose work based on how much I enjoyed it, rather than how prestigious it was.
I was happily underemployed.
But low pay and social pressure made it hard to stay that way.
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Contrary to myths about autism many of us have a deep concern for the wellbeing of other people. I may be seen as “over sharing” if I talk about personal issues to try to protect other people from harm. Being open is sometimes a way of alerting others to possible dangers.
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I didn’t want to be a police officer but I got persuaded into it as an alternative to social work.
I wasn’t naturally forceful, I was hesitant and shy, so I had to learn how to take control of challenging situations.
Some of the dangers I faced came from my colleagues.
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A few of my police colleagues were out and out thugs.
They wanted to fight, and if there wasn’t any conflict on a Saturday night, they’d create some.
These are the police I dreaded having to work with.
And they are the ones I dread meeting now.
They have too much power.
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I’m not difficult I’m different.
I’m not being inflexible or hostile.
I’m making invisible concessions
every second of the day.
Not to feel comfortable, or to thrive, just to get by and survive.
If I say what my head thinks, my heart sinks.
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@AnnMemmott
This is so interesting. Something I find problematic about socialising with NT people is the frequency with which they pass negative judgements about other people, based on scant knowledge, and driven by prejudice. Other NTs often seem to accept this, rather than challenging it.
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Izzy was the most loving and loyal companion.
She not only forgave my shortcomings, she pretended not to notice.
When life seemed impossibly difficult Izzy made it worth living.
She was a comforter and encourager.
She has gone on ahead of me now, but she’s with me forever.
11/end
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This is the only thing I’ve ever managed to sew on a sewing machine.
It took me two days to learn how to thread the needle and fill up the spools.
And then I had to persevere through lots of tangles.
This cushion is a lovely reminder of Izzy now she’s gone.
It’s still sinking in.
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Because each shift only had one woman officer we began to have regular meetings, to discuss relevant issues.
This included alerting each other to risks, from certain of our male colleagues.
Some officers reacted with scorn and abuse.
They were threatened by our solidarity.
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Sadly Izzy had a bad night, and hasn’t been able to stand up or pee today. The vet is going to see her shortly as it’s hard for us to know what’s going on. I’ve been beside her all day, except for my two short work shifts, when my partner took over.
Please send positive thoughts.
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It’s not just male officers who behave oppressively.
When I was still in the job I was stopped by a female officer in another part of England.
I didn’t say I was a police officer.
The sarcastic treatment I was subjected to was illuminating.
It’s not just a gender thing.
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#Thread
Sometimes I see a term that really chimes with me.
It happened today with: “autistic tenacity”*
Such a positive way of describing what sometimes gets labelled autistic ‘perseveration’ or ‘rigidity’.
Sticking with things.
*credit to
@Magnus919
for this fab phrase.
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In public order situations some of my male colleagues went out of their way to use force.
This wasn’t how we’d been trained.
When we policed CND demonstrations I saw women being targeted.
They were dragged away from the fence and dumped roughly into puddles.
Deliberately.
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The key to transforming my life as an
#ActuallyAutistic
person is proving to be remarkably simple.
Working out what I’m thinking or feeling, then acting on it.
Three years after a very late-in-life
#autism
diagnosis I’m starting to recognise and prioritise my own
#selfcare
needs.
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When I left the police things seemed to be changing a little in terms of sexism.
This wasn’t because of enlightenment, it was just the result of more women officers.
A shift in power seemed to be taking place.
But has anything really changed?
Clapham Common suggests not.
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@scribecheck
I once said to someone as a purely factual statement that I don’t have ‘friends’ in the commonly understood sense of the word.
They immediately went into “awwww”
pity mode, seeing this as a problem that needed to be fixed.
It’s by choice.
I’m not lonely. Socialising drains me.
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I’ve read 2 letters about myself this week.
One refers to Autism Spectrum Disorder, the other to Autism Spectrum Condition.
One asks what treatment I’ve had for my developmental disorder the other talks about access to training and support.
Language matters.
#AllAutistics
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It was a huge relief when I first read an article describing Complex Post Traumatic Stress Disorder.
This explained the kind of experience I’d had.
Like a roof collapsing under the weight of an accumulation of snow I had finally given way.
I was completely broken for a while.
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#Thread
Autistic survival strategies based on personal experience.
Autism research data can send a chill down the spine.
High unemployment, increased mental health issues, early mortality.
It not surprising that we sometimes feel hopeless about the future.
#AllAutistics
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The police sometimes close ranks and look after their own.
This can be benign, like when a colleague found a spare blue light, after the one on my patrol car got stolen.
But sometimes closing ranks to protect each other is dangerous, even deadly.
No one is above the law.
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#Thread
My autistic
#menopause
It’s hard to say exactly how being autistic (without knowing it) affected my menopause, and how the menopause affected my experience of being autistic.
The only thing I’m sure of is that they interacted, catalysed and magnified the effects on me
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#Thread
My main challenge on being diagnosed autistic, at 58, wasn’t how to mask better, it was how to be more autistic.
Most skills training aims to fix perceived deficits, rather than revealing authentic autistic strengths.
#LateDiagnosis
#AllAutistics
#identity
#autism
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#Thread
It’s my 15th wedding anniversary today. We’ve been together 17 years, so our relationship has just about come of age.
It’s the second marriage for both of us; I have two children with my ex-partner who are in their mid 30s now.
We are in our early 60s. Time hastens on.
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I feel blessed to have reached the age of 64 with much of my life still intact.
When everything began to unravel in my 50s it wasn’t clear why.
My career (which had been reasonably successful, if somewhat disjointed) got derailed.
My personal life started falling apart too.
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