Thread by @NortherlyRose

🧵 #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.
1/

One of the challenges is recognising when my reserves are running low.
This often only becomes apparent when some tiny thing, like temporarily misplacing my phone, causes great distress.
It’s an early warning sign, an indicator that some kind of urgent action is necessary.
2/

For those of us who have parenting or caring responsibilities taking time out to prioritise our own needs is often very difficult.
This applies to exacting employment situations too.
Even if the option of self care exists, we may deny ourselves if we don’t feel we deserve it.
3/

Others’ disbelief about disability is part of the problem.
Not everyone experiences being autistic this way.
But many of us feel disabled by lack of autism awareness, acceptance and accommodations.
It’s difficult to assert legitimate rights in a hostile, sceptical environment.
4/

I remember being on an over crowded commuter train at King’s Cross after being caught up in a crush on the London Underground.
Because I don’t look obviously disabled it wasn’t clear why I was struggling and needed more personal space.
I was wearing a sunflower lanyard though.
5/

Even after I said I was struggling with the proximity of other people because I was autistic and having a meltdown I saw passengers giving each other eye-rolls.
One man said “oh it’s ‘autism’ is it?” in a sarcastic, disbelieving way.
‘Micro-aggressions’ are incredibly common.
6/

It is hard to be assertive and keep on asking for what we need when it so often leads to a knock back.
I phoned the hospital ward my partner was on recently:
“I’m autistic and this means I need the post operative care information you just gave me verbally in writing”.
Ignored.
7/

I know how much pressure NHS staff are under but failing to provide accessible information is a false economy.
After 3 nights at home my partner was readmitted as an emergency and spent the next 4 nights in hospital on a drip.
I’m articulate so perhaps they didn’t believe me.
8/

Not being believed is one of the hardest things.
Not being believed when we say we might be autistic.
Not being believed when we report physical symptoms.
Not being believed when we say we’re being bullied or abused.
Not being believed when we say we’re thinking about suicide.
9/

Being seen as unreliable witnesses about our experiences is a form of ‘testimonial injustice’.
Implying that autistic people can’t be trusted to give honest accounts of ourselves strikes at the core of who we are.
Being doubted is demeaning, undermining and infantilising.
10/

It’s also incredibly dangerous.
The threads we hold onto are fragile. Sometimes we don’t realise how close to the edge we are.
The lack of appropriate #autism #crisis services is scandalous.
How can autistic people be expected to endure when all hope is taken away from us?
11/

We often rely on autistic peers for support, but they have limited capacity and need to prioritise self-care.
Informal peer support isn’t a substitute for properly funded and resourced services.
We need them and we need them now.
This is a matter of justice and human rights.
12/

I’m fortunate in having some part time paid work at the moment which means I can pay for private psychotherapy.
I explored what was available via the NHS but my area had no autism appropriate option.
Psychotherapy isn’t an indulgence, it’s a necessity after decades of abuse.
13/

It’s how I’m learning to recognise emotional and empathic limits, and maintain healthy boundaries.
But psychotherapy doesn’t address structural issues: the systemic injustices and inequalities we experience simply because we’re autistic.
That’s why activism is important too.
14/

Evidence is essential too and I’m fortunate to be involved in research projects where autistic people are working alongside academics, some of whom are also autistic.
The pressure for change is mounting.
The best chance of achieving it is through combined, concerted efforts.
15/

We need to raise individual and collective #ActuallyAutistic self worth to the point where we all know what we deserve and refuse to settle for less.
Connecting gives us strength and means we don’t feel like we’re battling alone.
Solidarity with autistic people everywhere.
16/end

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