Rose Matthews Profile picture
Apr 18, 2022 19 tweets 7 min read Read on X
#Thread
Seldom seen and seldom heard: the marginalisation, minoritisation, and under-representation of many #ActuallyAutistic people.
Some personal reflections on why this happens, and what we can do about it.
#AutismAcceptanceMonth
1/
The first thing to say is that I acknowledge my own privilege.
I’m white, I have two degrees and a professional qualification.
I work part time.
I get emotional support from my partner and family. I’m having psychotherapy.
All of these things help to insulate and protect me.
2/
The fact that I only discovered I was #ActuallyAutistic late in life undoubtedly harmed me.
For nearly six decades I had no frame of reference to make sense of things.
It’s impossible to disentangle the abuse I suffered because I was neurodivergent, and because I was a woman.
3/
But I didn’t experience additional discrimination due to racism or LGBTQIA+phobia.
For much of my career professional status gave me a position of power.
I occupied a platform of privilege, even though I was subordinated to contemporaries who were white, middle class and male.
4/
I’ve reached the life stage where #ageism starts to have an impact.
Older autistic people are virtually invisible. Just look at the line up for most #autism projects and events.
The same is true for black and brown autistic people, and those from other minoritised communities.
5/
The usual excuse is that we were ‘hard to find’, to which I’d respond: “what steps did you take?”
We’re not ‘seldom heard’ because we’re ‘hard to reach’, it’s because involving us isn’t seen as a high enough priority.
Representing diversity is an essential; a non-negotiable.
6/
When I attend autism events as part of the audience I play ‘Bingo’ as regular speakers pop up presenting on some new topic.
One invitation leads to another, but getting on board in the first place usually requires networking.
And you have to be seen as someone who’ll ‘fit’.
7/
Networking relies a lot on self promotion.
That’s why I struggle with LinkedIn and my relationship with social media is bittersweet.
Many important autistic opinions get suppressed by algorithms.
And when people object to this they risk being accused of envying ‘influencers’.
8/
So what can we do to make sure that representation of autistic experiences and perspectives is as diverse as possible? I’m
#AskingAutistics
to find out what other
#ActuallyAutistic people think.
Here are a few ideas to get the conversation started.
Be aware of our privilege.
9/
That may mean stepping back from an opportunity ourselves so it can be offered to someone in an under represented group.
Challenging lack of diverse autistic representation whenever we witness it.
If we seek to involve autistic people we must design in inclusion factors.
10/
Think about where and how we advertise opportunities.
Make it easy for a diverse range of people to apply.
Don’t expect people to give up their time without financial compensation (many people can’t afford to volunteer).
Diversify existing spaces and create new possibilities.
11/
Try not to keep on asking the same autistic people to get involved.
And if you’re someone who gets asked back repeatedly think before you accept invitations.
Has the opportunity been advertised?
Should it be?
Could someone else bring a different and more diverse perspective?
12/
One of the best books I’ve read was on the McDonaldization of society.
It included suggestions on subverting the fast-food culture that has taken over our lives.
Like buying a coffee in McDonald’s then staying for hours.
I write long #Twitter threads instead of pithy tweets.
13/
Twitter seems to be becoming increasingly polarised as it becomes more commercialised.
For some people Tweeting is an important part of making a living.
It’s essentially ‘work’.
There’s nothing wrong with this, but it can make other people feel overshadowed and excluded.
14/
People with few followers see larger accounts getting far more attention and it doesn’t seem fair.
The algorithms are the real problem here.
What I loved about @Twitter when I first started was the serendipity.
It takes the joy out of it when what I get to see is manipulated.
15/
I was prompted to write this thread by several similar conversations starting up in different places.
As #ActuallyAutistic people who are minoritised and marginalised as whole communities, we should challenge the insufficiently diverse representation of autistic perspectives.
16/
As @obrerx says, the point isn’t at all to personally slam larger accounts. “It's to point out that we don't have to conform to the structure that is pushed on us by Twitter, social media or the established mindset of our social environment. We can try to lift each other up”.
17/
We should
“…lift each other up. Lift up those unheard voices. If you can stand being on twitter, spend some time everyday searching the #actuallyautistic tag and lift up people making excellent comments but who are ignored.”
@obrerx
#AutismAcceptanceMonth
#AutisticTwitter
18/end
@threadreaderapp unroll please!

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Rose Matthews

Rose Matthews Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @NortherlyRose

Apr 3
#Thread
#Autism awareness and acceptance really matter because stigma, prejudice, and lack of trauma informed, ‘experience sensitive’ approaches perpetuate structural inequalities and injustices.
In my locality #SocialCare needs of autistic adults come under the #MH service.
1/
I saw an unqualified Assistant Psychologist in the #CMHT after my #autism diagnosis.
I wanted help with the existential crisis of late autism diagnosis but ended up being gaslighted.
I realised what was going on and discharged myself after explained what iatrogenic harm meant.
2/
A few months ago a combination of factors (none of them to do with mental health) meant that I needed social care support.
Because I am #Autistic I was told that my assessment would be carried out by the MH team.
I was so traumatised by my last contact with them I declined.
3/
Read 13 tweets
Feb 18
#Thread
Adjusting to a very late in life #autism discovery.
How my life has changed 5+ years on.
Like many #Autistic people I had experienced repeated episodes of #burnout and #trauma.
By the time I reached my late 50s I was exhausted.
I had no energy to get going again.
1/
This quiet breakdown could easily have gone unnoticed or been explained by a number of other things.
I’d always been quirky and different, a highly sensitive, deeply empathic person.
My distress could have been attributed to a personality issue, or to anxiety
and depression.
2/
Through good fortune and serendipity I found my way to a service that helped me to start making sense of my life.
The process of acceptance, adjustment, and self-advocacy has continued since then.
It’s not enough for me to adapt, other people need to make accommodations too.
3/
Read 16 tweets
Jan 2
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.
1/
Without understanding why this was happening, it would have been impossible to remedy the situation.
I’d have carried on pulling at the loose threads until there was nothing left at all.
Discovering that I was #Autistic gave me the answers I needed to start to repair my life.
2/
What needed fixing wasn’t me, it was my living and working environments, and communication between me and other people.
Although I’d realised that interpretation and translation prevented misunderstandings, I hadn’t recognised my language and culture were distinctly Autistic.
3/
Read 7 tweets
Nov 16, 2022
I’m celebrating the 4th #autieversary #autiversary of getting my v late in life #autism diagnosis today.
Here’s a thread of some of the #threads I’ve written along the way, starting with my 1st anniversary when I wrote about my beloved dogs.
#ActuallyAutistic
#AutisticTwitter
1/
Nearly two years on from my #diagnosis I wrote about how much I had discovered about #autism and myself.
2/
On the second anniversary of my #autism diagnosis I wrote a thread about #bullying (not realising that it was my #autieversary at the time). It was very appropriate though, as bullying and abuse have had a huge impact on me, especially in adulthood.
#ActuallyAutistic
3/
Read 8 tweets
Oct 29, 2022
#Thread
Rebuilding a career after a late in life autism diagnosis.
Personal reflections of a very late discovered #ActuallyAutistic person, 4 years on.
1/
Burnout was a factor in me finally finding out I was autistic.
I’d become overwhelmed and exhausted.
I’d drifted to a halt, and then couldn’t get going again.
I was overloaded by being bullied at work, being in perimenopause, unresolved trauma and my partner’s serious illness.
2/
A demanding new job immediately after my diagnosis didn’t kickstart recovery from burnout like it would have done previously.
What the psychologist had told me about taking ‘baby steps’ was true, even though I didn’t want it to be.
I finally realised I couldn’t afford not to.
3/
Read 23 tweets
Oct 14, 2022
#Thread
Why it’s sometimes difficult to know how unwell I am.
A personal autistic perspective.
I’ve been feeling rotten since Sunday, with some kind of respiratory illness.
After 3 years of respite from colds and flu it came as a bit of a shock.
I haven’t had Covid yet either.
1/
I wasn’t too worried to begin with, as my partner was ill before me.
After 2 or 3 days he started to feel better, and I assumed I’d be the same.
Unfortunately I’ve been getting steadily worse.
Less energy.
More coughing.
Less desire to eat.
More sleeplessness.
Strange pains.
2/
I’m almost always in some kind of pain so that in itself isn’t a reliable indicator of being unwell.
Nor is severe fatigue, which occurs so regularly it seems normal.
I rely on objective symptoms like fevers, rashes and swellings.
Tests are a bonus, if they are available.
3/
Read 21 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

:(