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A Letter To My Pre-Diagnosed Self | Lydia Wilkins

Lydia Wilkins is a freelance journalist specialising in disability and social issues. Her work has been seen in places such as The Metro, The Independent, Insider and Refinery 29. She also works as a speaker, collaborating with organisations such as Naidex, the Student Publication Association, and Bath SPA University; the Love Disfigure Talent Agency represents her. Her debut book, The Autism Friendly Cookbook, was published in November 2022. She is on the Autistic spectrum and is currently a Long Covid patient.

In this blog post, Lydia writes what she'd like to say to her Autistic pre-diagnosed self, 10 years on from diagnosis.

A white woman wearing a red dress

Image: Shona Louise photography

A letter to my pre-diagnosed self

Hello you,

It’s a bit strange, nearly a decade later after diagnosis, to look back. The feeling of terror, the almost tangible ‘what if’ of panic on feeling found out, still feels all too real. But the thing is, deep down inside, you already know that - and herein lies a choice. To accept the box tick of different is to say yes to a life that is far richer, with help and acceptance, but an undercurrent of having to battle for a place in this world. Or, to not accept, is to say yes to a state of self hate and isolation. There is more of a stigma in the words that’ll be attached to you otherwise - ‘lazy’, ‘try harder’, etc. To be diagnosed as Autistic is all but a descriptor, an explainer, of what you already are. The people who love you most can already see that - this is just another word, another phrase. The rest of the world is but a surplus in that.  A lack of acceptance is a lack of to be deserving - please never, ever allow yourself to be deflated, and made small. It is not worth it. And it shouldn’t be incumbent on you to do so or to be that way.

An explanation or justification of your neurology is not owed to anyone who is nosy or toxic, with terrible intentions. In time you will learn to be choosy just enough; remember that it is a privilege for other people to come into your universe, it is not a given. Know your rights for when it’s needed - because my God, you are going to need this. The activists who battled for recognition of disability in law have paved the way - the law is there to help, and you will need to use legislation. Take ownership of ‘disability’; there is a power in that, and something beautiful. The ‘d’ word is a multi faceted group of humans, the underdogs, the brave and the good. Find them, and dare to care. That is not a crime.

Emotional Labour and the cost of that will take time to learn. You are not a walking, talking educational free resource - you are a person, too, and you are allowed to exist wholly, and freely. Activist or Advocate are forced on people far too much for being assertive - and far too often on women. If it’s in a work context, ask to be compensated for your time - and enforce the boundaries you are comfortable with. It is beyond draining; ‘I’m curious’ or ‘I just want to help’ are nonsense excuses. Help is a matter of consent. And we forget that far too often.

A white woman smiling at the camera

There is a power in the knowing

There is a power in the knowing. In time you are going to have to battle for access to medical care, for support, and in the newsroom - in an industry that says it cares for the voiceless, when it actually so often fails to do so. Find the employment statistics, the failure of the healthcare system, look at the barriers - and ask ‘why’. Unpick and unpack, arm yourself to jump the barriers. You need to be your own guardian at the best of times; it shouldn’t be that way, but it is. We sadly need to be twice as good in this life; by owning the space, things will start to change - and you are going to witness that. Agency and autonomy are taken away far too much - because we are female, Autistic, ‘different’. That comes from the places you won’t always think it will; make active choices, and question what your instincts tell you to. If you are uncomfortable, say so - and do not let anyone tell you ‘you’re autistic, you’re always going to get this wrong’ to explain away how you feel. That’s gaslighting.

To think critically in a post truth world is what we need - but try not to be aloof. Forget Twitter, and the ridiculous cat fights it inspires; forget the collective blanket-all approaches of conformity that is expected from strangers. Remember that age is but a number; inter-generational conflicts are tedious, and we both know that. But ageism is arbitrary and oppressive; it can work both ways. To be developmentally delayed can feel overwhelming at the best of times. But, we do not get alternative facts - they are not malleable. You are allowed to speak back and up - and to challenge. The world will not end. Hallmarks of your diagnosis will be weaponised to undermine you sometimes - but that is not a reflection of yourself, you as an individual, or that of your work. And someone should have told you that far sooner.

Lastly: tap into your femininity! It’s not something to apologise for or attempt to constantly suppress. Not by the visuals, but in all that you do - writing, in speech. There is something joyful in that, in feminism - and we should be unapologetic about that. Shame is a tool used to be oppressive and to silence; there needs to be a time for change. You will see some of the bravest people on stage and in person in time; there are the war correspondents, the journalists taking on drug cartels, the women of Iran who loudly, proudly will declare that the next revolution comes from the women. The devil is in the details - the flowers in their hair, tiny diamonds of jewellery, crimson nails, the pregnancy clothing for the battlefield. They are an example to us all of what it means to own and live in a space, to stand up and be counted. They are unapologetic, and they are heroes.

You will fly

We are the people who are awkward and who question every single little thing, but that is an assumption; we bring more to the table than what we are given credit for. Sit in their discomfort, for what you are is not a problem - and you have every right to be here. That one person reads your work is a privilege - but what you write will have an audience, more than you ever allowed yourself to think about, let alone imagine. You have the potential to do such wonderful things, my darling. If you open yourself up to the universe, if you dare to ask and to say yes to things and to be vulnerable for the right reasons, you will fly. And I love you for that.

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