Rose Matthews Profile picture
Apr 3, 2022 21 tweets 7 min read Read on X
#Thread
The problem with privilege.
Personal reflections from a very late diagnosed #ActuallyAutistic perspective.
Inequality is something most autistic people are horribly familiar with.
We get spoken on behalf of, pushed to the sidelines and ignored.
#AutismAcceptanceMonth
1/
Most (probably all) autistic people experience inequality, but some of us are more unequal than others.
Additional inequalities are partly structural, resulting from prejudice and discrimination towards people who are black, brown, LGBTQIA+, physically disabled, non-speaking.
2/
Age, gender, educational achievement, and social class also help to determine the attitudes and obstacles we encounter.
As a white 62 year old autistic woman I have privilege, but not as much as when I was younger, undiagnosed, and in the peak years of my professional career.
3/
Personal prejudices of individuals marginalise and minoritize autistic people too.
In-between the personal and the political sit numerous organisations acting as gatekeepers for who gets to be involved.
My social work training made me reflect on what it means to be white.
4/
There are many situations in which I am at an advantage simply by virtue of my ethnicity, whether or not that is recognised by me or the other people involved.
This is so important when it comes to understanding the challenges black, brown, and other minoritised people face.
5/
If you’re #autistic and #black you’re likely to experience discrimination on both counts.
If you’re a woman, non-binary, or trans, add on gender-based discrimination.
And if you’re physically disabled, or old, there’s further marginalisation.
Discrimination is multi-layered.
6/
While we all face unique challenges, and nothing should be assumed about our lives, it’s important to acknowledge that some people ARE less equal than others.
We shouldn’t just encourage them to try harder to be heard.
We must dismantle barriers they face.
#intersectionality
7/
When I say ‘we’ I mean that both collectively and individually.
There is always something more we can do to tackle inequality.
If we’re fortunate enough to be given some kind of platform we can question who isn’t being represented, and make sure that they get included too.
8/
The problem with privilege is it’s relative.
As people experiencing discrimination it can be difficult to hear that others are even worse off than ourselves.
We battle to be heard in a world with a very limited attention span, and we sometimes end up speaking over each other.
9/
Many of us have got a lot to say.
It’s the result of having been silenced for so long.
When we finally find our voices and the confidence to speak up it feels liberating.
At last we can tell the world how we feel.
Hence my long Twitter threads about my late autism diagnosis.
10/
I can only speak with any certainty about my own experience of being autistic, but that doesn’t mean other people’s lives are less important.
For many of us social justice is a defining characteristic of what it means to be autistic, and this is what underpins our #activism
11/
The spaces where autistic people get listened to are still limited.
It gets crowded and we feel like we’re competing to be heard.
We need to create more opportunities as well as addressing inequalities within the existing ones.
#NothingAboutUsWithoutAllOfUs
#ActuallyAutistic
12/
Privilege is more of a problem if it’s not acknowledged.
It seems like a contradiction, but because it’s relative, we can be ‘disadvantaged’ and ‘privileged’ at the same time.
That’s how I see myself.
There’s a lot that’s within my power to fix.
And a lot more that’s not.
13/
Some seem to think if all #ActuallyAutistic people tried harder they’d have access to the same opportunities, but this isn’t so.
Disadvantage and oppression are partly politically determined (as with the proposed exclusion of trans people from the UK conversion therapy ban).
14/
Individual outcomes also depend on socioeconomic and educational privilege or disadvantage, and networks of support we have access to.
While I went through difficult times, in insecure accommodation on a low income, I was relatively privileged thanks to my family’s support.
15/
#AutismAcceptanceMonth is a difficult time for many autistic people.
With each year that passes it’s obvious how far we have to go.
I sometimes feel like I’m chasing an inflatable which is drifting out to sea.
I should be getting closer, but it’s still just out of my reach.
16/
If we look back we can see how far we’ve come.
And we can take heart from other social movements too.
Long battles for justice have brought about significant changes, but it’s never ‘over’.
Their struggle for equality, inclusion and rights goes on, and we should be allies.
17/
There’s a particular problem with @Twitter because content is managed in a way that excludes some people.
I opt to see ‘Latest’ rather than ‘Home’ Tweets to mitigate this.
If I find myself in a bubble where everyone is agreeing with me I try to seek out some opposing views.
18/
Social media isn’t known for constructive debate on contentious issues, but this can happen here, just as it can in other spaces.
It can be painful if what’s under discussion is something we feel passionate about, and are affected by, but if we want change it’s worth it.
19/
Advocating for social justice helps me cope with feelings of frustration, anger and helplessness about inequality.
I love what @MorenikeGO says about how she noticed various forms of injustice, and found ways of “doing right by others”.
There’s always something we can do.
20/end
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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

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