Monday, 20 January 2025

Old Twitter threads - WAAD 2022: Autistic Identity

The WAAD thread of 2022 was a brief look at what I consider the 'stages' I went through post diagnosis when it came to my #AutisticIdentity

Helen Ellis on X: "It's been 2 decades since I first starting acknowledging my autistic identity, and over 13 years since I was formally diagnosed. This #WorldAutismDay I want to celebrate everything I've learnt in that time, and offer encouragement to others earlier in their journeys 💜" / X

Originally published 


It's been 2 decades since I first starting acknowledging my autistic identity, and over 13 years since I was formally diagnosed. This #WorldAutismDay I want to celebrate everything I've learnt in that time, and offer encouragement to others earlier in their journeys 💜

The main thing I really want to make clear today is that our own acceptance of our identity comes in stages, or at least it did to me. Because most of us will have gone a lot of life not knowing we're autistic so we're having to re-explore who we are behind the masks 💜 #WAAD

I'm now at my 5th stage of my autistic life, I started out pre-dx "I think I'm autistic but what if I'm wrong and I really am just a difficult person no-one likes?" I didn't have confidence in my own understanding of autism to be sure, I needed a professional to confirm it to me

Post dx I hit stage 2, the "oh my god I know who I am now" absolute relief stage, it lasted a few months or so but quickly transitioned to stage 3, the "well now what" stage. This lasted a good few years, trying to figure out how to explain being autistic to people and my needs

I was involved in the Autism in Pink project around 2013/4 and had felt really positive about progress happening in autistic acceptance, but a year or two later it felt like nothing was changing and I hit stage 4, what I call my "I'm mad as hell" stage!

This angry, wanting to change the world phase saw out my 20s but as I hit the big 30 I mellowed into the stage I'm still in now, my "I have a platform and I'm not taking no for an answer" vibe, which I have no intention of moving on from any time soon!

Obviously "not taking no for an answer" is only in regards to things like being refused reasonable adjustments, not things where consent is involved. It's amazing how many people still get those things the wrong way round 😧








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Old Twitter threads - 5000 days of knowing my autistic identity

 Helen Ellis on X: "It's been 5000 days since the most important day of my life, the day my autistic identity was confirmed via a clinical diagnosis. #5000DaysOfKnowingMyAutisticIdentity" / X


Originally published 

#5000DaysOfKnowingMyAutisticIdentity

It's been 5000 days since the most important day of my life, the day my autistic identity was confirmed via a clinical diagnosis.

I know formal diagnosis isn't for everyone but for me it was such a huge moment of validation, the moment a clinician declared that in their professional opinion it wasn't "all in my head" and I wasn't just "being difficult" all the time.

A lot has changed in the 5,000 days since that moment - I was diagnosed under a Labour government, in the first few weeks of Obama's presidency, and in a time before most of us knew what Twitter was or had a smartphone!

When I had my clinical assessment I was considered a "late diagnosis" at nearly 22 years old. Nowadays I would barely make that criteria if I got diagnosed at my current age of 35!

Because that's how far we have come in the 5,000 days since I got my diagnosis - we know so much more about autistic life now, understand so much more about what makes life better for autistic people.

And I've learnt so much about myself in those 5,000 days. About who I am, how to get the best out of myself, what I truly want from life and what I'm willing to compromise on.

I've let go of things and people I thought I never would, forgiven myself for mistakes that were never my fault, and found new sources of joy to brighten my life - mainly
@Saracens but others too!

I've also circled back round to past joys I'd let go, rediscovering my love of physics & space, taking part in amazing research like Autism in Pink project, and even co-authoring a book on Masking with the brilliant
@SedgewickF
&
@lauralhull

I think it's pretty perfect that I've spent this 'anniversary' of sorts with my best autistic friend and book twin, the incredible

@CarlyJonesMBE, giving her a lift to Bournemouth so she can do important work for
@Autism 💜

Because that's the true beauty of autistic friendship, when your spiky profiles allow you to support each other in times of need and challenge 💜

I have no idea what the next 5,000 minutes hold much less the next 5,000 days but I do know that I'm going to keep moving forward (even if it's sometimes in a sideways manner), keep celebrating my Autistic Joys and keep aiming for that Moon!



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Wednesday, 21 August 2024

Old Twitter threads - WAAW 2021: Autistic Joy (Day Five - Autistic People)

 Originally posted April 2nd 2021 (World Autism Awareness Day 2021)

https://x.com/HJ_Ellis/status/1377985287645769733


Day Five of talking about #AutisticJoy for #AutismAwarenessWeek and its now #WorldAutismAwarenessDay! Today is going to be all about the joy that my tribe and my allies bring me - from being with them to celebrating their achievements, today is about joy from others! 💜










Starting with one of the most amazing autistic lady I have ever had the honour to call a friend, the wonderful
@CarlyJonesMBE
!! A truly awe-inspiring woman who takes on huge challenges with a big smile and an infectious cackle of a laugh that never fails to cheer me up! 😆😘💜
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My favourite memory with
@CarlyJonesMBE
is undoubtedly at Professionals Conference last year when she was a tad uncomfortable before her talk so I stepped in to help as best I could (my role as staff is to help speakers with anything they need!) 👍😆
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Any time I get to spend with
@CarlyJonesMBE
is treasured - even if its waiting together post-conference on an Edinburgh pavement for a taxi to take the pj-clad superstar to her flight home! Its been a real joy to get to work together over the years and long may it continue 🤞💜
Another wonderful regular conference friend who's presence brings me #AutisticJoy is
@GillLoomesQuinn
a great friend and ally who is a brilliant source of support. We have a kinship over things we advocate for and the future we want to see for autistic people 💜
I've had some great times with
@GillLoomesQuinn
in between interviews we've been doing or at conferences discussing all sorts of topics. An incredible person with such passion for justice, accountability and ethics, I'm lucky to be able to say we are friends 💜

I'm suddenly realising how few photos I have with people from recent years 😱🤦‍♀️😭 Must get better at posing for some group shots when we're all back in the same locations!

5:42 PM · Apr 2, 2021

Ooooh I found one of
@GillLoomesQuinn
and I along with some awesome allies,
@SarahJaneCritch
,
@CarrieGrant1
,
@BobbVenessa
and
@SedgewickF
💜💜💜💜
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Because its not just friendships with other autistic people that bring me #AutisticJoy, being around passionate allies and inspiring women does too! In fact I think it was
@SarahJaneCritch
who introduced me to the term "Autistic Joy" when she was my boss! 😀💜
@SarahJaneCritch
was a great boss who made a tough new job have some really wonderful moments, I learnt so much from working with her and am really grateful for the friendship we have that outlasted our working association!
But if we're talking about an ally I learnt so much from it would be remiss of me at this point to not mention my mum, my constant champion and support who has always been there for me, knowing when to push me and when to tell me to stop 💜
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My mum has always wanted to learn as much as she could about autism to figure out how best to support me and the other (undiagnosed) autistic members of our family. She was the one to advise I take a planned nap on Christmas Day and book leave after my appraisal for recovery.
Another fabulous ally I could not do without is
@SedgewickF
! Quite possibly the closest I will ever get to having a soul mate, she is one of my best friends as well as being a huge champion of autistic people and a genuine ally in the world of meaningful research and coproduction
From trips to the rugby, effectively bring on holiday together in Nice for a conference, six million messages, and writing a book together its been a brilliant few years do far - how has its not even been 5 years yet?!?!



But
@SedgewickF
is more than just a personal friend, I get a huge amount of #AutisticJoy from her work - useful research being done with autistic people with tangible benefits for autistic people, and especially her regular paper threads making research more accessible to me! 💜
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Having put up various photos from conferences it would be wrong to not now mention my wonderful colleagues
@_WoollyThinker
,
@lorrainemac137
and
@Noushyno0
who make conferences so fun and enjoyable! I get so much #AutisticJoy from being at conferences and miss them so much! 😭💜
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I'm so lucky to have a job where I can indulge my passions and get the warm glow of #AutisticJoy from something I'm being paid to do (even if its not always in my job description!) The tough days are tough as hell but the good ones make it all so worth it 💜
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And speaking of work related things, I love that I get to work with the marvellous
@JoTheSpinner
on the APPG Autism advisory group! The fact that one of the biggest APPGs has an advisory group chaired and vice-chaired by two autistic people is brilliant!
Through the APPGA advisory group I've also had the chance to work with the amazing
@BobbVenessa
, who is a brilliant ally and champion of autistic people and does a fantastic job chairing the
@LambethNas
branch and running
@A2ndVoice
! 💜

A lot of #AutisticJoy comes from being on Twitter and seeing so many amazing autistic voices - so thank you to those who make my days better! 💜

@ItsEmilyKaty
@LauraFMcConnell
@Sarahmarieob
@Saraheboon @milton_damian
@karamina
@Girl_by_the_Aga
@marinamaral2
@spacedoutsmiles

I always worry about missing people off when doing tagged tweets, so basically if you're autistic and I follow you then consider yourself included in bringing me #AutisticJoy and happy feelings via Twitter! 💜







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