Rose Matthews Profile picture
Jun 12, 2022 13 tweets 4 min read Read on X
#Thread
Being part of an autistic #community in my own neighbourhood.
A personal #ActuallyAutistic aspiration.
1/
Like many late discovered autistic people I found my ‘tribe’ online.
Just before my autism assessment feeling accepted in an online forum of autistic people persuaded me I was on the right track.
Now my main connection with other #ActuallyAutistic people is through @Twitter.
2/
None of the people on the online forum I was part of lived near me, but I made a particular connection with one of them.
We emailed and met up to go dog walking before Covid, and we still stay in touch intermittently.
If we lived closer we’d probably get together regularly.
3/
I’ve been interested in autistic intentional communities and co-housing for some time.
The idea of living in the vicinity of other autistic people appeals to me.
The day before yesterday I had a breakthrough moment when I realised I already am…
I just haven’t met them yet!
4/
The barrier to meeting #autistic people in my own #neighbourhood isn’t that they aren’t there, they almost certainly are.
Most people in my age group don’t know they’re autistic, which complicates things.
Which isn’t to say friendships need to be age specific.
They don’t.
5/
As a child I was fortunate to have creative, eccentric, (almost certainly autistic) older people as part of my family’s social circle.
Inter-generational or age-gap friendships always seemed perfectly natural to me.
Why should socialising be limited by when we were born?
6/
I feel the same way about gender, education, social background, employment status, ethnicity, and many other ways in which people might seek to divide us.
After discovering I was autistic I went on a course where I met other very late diagnosed people.
It felt so supportive.
7/
But it was in a city a long drive away.
They took pity on me because there was nothing like it in my vicinity.
The service in my area doesn’t offer any online or face to face groups.
I checked again a few weeks ago.
I’m going to get in touch and explain why this matters.
8/
Peer support can be incredibly helpful to people in marginalised and minoritised groups.
The reason my local service doesn’t run groups may be to do with their premises - there’s no space for people to meet up in person.
It might also have something to do with power dynamics.
9/
The model they’re operating is a service provider/service user one.
The autistic person takes them a problem, and one of their support workers helps to fix it.
Perhaps I should take them the problem of there not being any meet-ups for #ActuallyAutistic people in my locality.
10/
They may suggest I set up something myself (that happens a lot).
This could be seen as an empowering approach.
But they’re getting £££ to provide support services, they have offices, admin staff, and people’s contact details.
I’ll give it a go and let you know what happens.
11/
Social isolation has been compounded by the pandemic and we’re not clear of Covid yet.
But there are many ways of building community and connectedness in spite of this, as I’ve seen from other autistic-led projects.
#AskingAutistics please add good examples you know of!
12/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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