Yes, this research is scientifically important, but it is also terrifying to many #actuallyautistic people, because #eugenics.

(I don't normally tweet about #autism, but buckle up...)(1/) https://twitter.com/NCNDgroup_KCL/status/1275505125176610819

First up, and to avoid any doubt, yes I'm #autistic. I don't talk about it because honestly, I'm a busy girl with many, many facets to my being and somewhere along the line I decided that #autism wasn't one I wanted to share with strangers (2).

And given the dominant (wrong!) cultural narrative around #autism which portrays a by definition diverse collection of individuals either as mute children who destroy their parent's lives or as the actual Sheldon Cooper, you can't exactly blame me (3)

I've existed for 34 years in a world that tells me I'm different (in a bad way), and since gaining an #autism diagnosis 13 years ago, almost every experience I've had has taught me to keep this (very important) part of myself a secret - and here's the kicker - for my own good (4)

You see, assuming you are 'neurotypical' here, the social world as you experience it was designed by people who think and experience the world as you do. Their brains were wired the same way yours were, and so you can move through it with relative ease (5).

For those of us who are #actuallyautistic, living in this world can prove problematic. It doesn't always make sense, and can present us with issues not common in the general population. A personal example I can give is to do with the sound electricity makes (6)

Yes, electricity makes noise. Most people can't hear it, but I can. My ears pick up frequencies they should not, and when this is challenging it is called audio-sensitivity. Many autistic people have sensory sensitivity, whether it be to light, sound, smell, or even touch (7)

I have taught myself to shut out the noises around me, but when I get anxious or stressed that becomes very difficult. Think of it like trying to meditate whilst someone plays loud music next to you. I exist in a world which can prove deafening; where the walls make noise (8)

I also have a VERY high pain threshold which means I can require medical or dental treatment and not realise it, but unexpected touch like someone's arm brushing mine can feel like I've been stabbed. Also pain killers don't really work, another weird side-effect of my #autism (9)

I also think in images, don't understand numbers, can still read my high-school biology notes when I close my eyes, and remember EVERY THING YOU EVER SAID THAT CONFUSED ME because my brain is unable to shelve unsolved tasks. I'm not joking. (10)

Circling back to how I hide these things 'for my own good'. There are 2 things to discuss. The first - and this is important - is that I have a choice. I have the ability to 'mask' my #autism which allows me to decide how I appear to the world. I generally opt for 'normal' (11)

This comes with a cost, because it means #masking which is essentially just watching a lot of people very intently over the course of your entire lifetime, assimilating parts of their personalities, and practicing until your impersonation is so good that everyone accepts it (12)

#Masking is exhausting, it makes you think you are not good enough as you are, it robs you of the joy of just being unashamedly you, and it robs the world of really getting to know who you are. It is a form of unrecognised labour, and it is lonely (13)

Sounds awful, right? So why do I (and people like me) do it? Well, Ariel pretty much nailed it. We want to be part of your world. She grew legs, I learnt to mask. We both lost a big part of ourselves in the process (also, down with patriarchy SING GIRL SING) (14).

But tbh I think that #masking (for me) is worth it, because it means that you (stranger) accept me. That acceptance opens up countless opportunities which I believe would not exist if I did not have the ability to conform to the neurotypical norm (which is kinda boring btw) (15)

So, #masking can cause real harm to individuals who do it, but (assuming they feel they have a choice, which is a whole other thing) they do it because it allows them to function in the world and live the lives they want to. (16).

If you're still with me, I'm getting to my point, which is this: Autistic people are diverse and different and the world is a challenging place for diverse and different, so overwhelmingly those who have the ability to hide, to fit in, choose to do so. You don't see them. (17)

I don't blame #autistic people for hiding their #autism. I usually do. But what this does is create an environment where the uninitiated genuinely believe that autism IS the negative cultural tropes we are exposed to, and so they fear it (18)

And what fear does is create a world in which people feel justified (or even 'heroic') in searching for a 'cure' for #autism, which to most #actuallyautistic people reads as searching for a way to avoid our existence. And tbh, that's really not very nice. (19).

Let's try this another way. Autistic people overwhelmingly favour the term 'autistic person' rather than 'person with autism' because they see their autism as being intrinsic, rather than something they 'have'. An intrinsic quality cannot be cured (20).

#Autism itself is not harmful to the individual. Society's unyielding nature is harmful to the individual.

I'll say that again. Autism is NOT harmful to the individual (21).

People searching for a cure to #autism fall into 2 categories: those who want to help individuals they believe are being harmed, and people who want to remove autistic people from the equation to make everyone's lives easier (22).

Those who want a cure because they want to alleviate suffering (admirable, go you!), you should be looking at society, not the individual. Autistic people are different, not damaged. If you really care about our experience, fix society, not us (23).

This is where I see the research in question as being important btw, because while we fix society to make it more inclusive (and honestly an autistic-friendly society would be SO nice for you too + I'll explain why), we also need to raise health care for autistic people (24)

#Autistic people have a lower life expectancy (mid 30s!)but this isn't because they are fundamentally destined to die young. It is mostly because of the #anxiety involved in living in society as it stands, associated #mentalhealth issues, and lack of access to #healthcare (25)

Lets sit with that for a moment. The mental and physical toll of living as an #actuallyautistic person in this world means that my chances of having already died from #suicide, poor healthcare, or #stress related illness are monumental. On average, I should be dead right now (26)

So yes, lets do research to find out what it is that fundamentally makes my #autistic brain different from your brain, and then use that knowledge to guide empathetic and just social change so that my life expectancy stops being in negative numbers (27)

Now, identifying differences between #autistic and neurotypical development means that autism starts being something that can be detected pre-birth - which isn't the problem in itself. That knowledge could unlock some very useful discovery that helps people (28).

The huge big red flag problem is that most of society, including most medical professionals, still see #autism as something that needs a cure, a developmental disorder, many of whom will see the opportunity to detect autistic embryos as a positive step towards eradication (29).

Now I can get on board with efforts to screen for fatal developmental disorders, but #autism is not a fatal (or even harmful) developmental disorder. Screening for #autism would serve the purpose of eradicating a portion of the population for societal gain. That is #Eugenics (30)

This research does not propose screening, nor does it support #eugenics. The research is sound, as is the way it is presented to scientists. Where I think they could have done much better is in the tone deaf attempt at #scicomm which called the authors 'heroic' (31)

It is not 'heroic' to run a robust scientific experiment. Heroic evokes the idea of saviours and victims, of a critical battle, of winning against an enemy. #Autistic people are not victims nor is #autism the enemy. You know who thinks they are? People who support #eugenics (32)

My point is, there is no way the people running this kind of experiment don't realise that this kind of work could be concerning to those of us who are genuinely fearful of our perception in the cultural zeitgeist. I am, by the way. Fearful, I mean (33).

Every time I have to disclose my #autism I am fearful of the reaction. I am fearful when I disclose it at work, because experience tells me that no matter how competent I have been up to that point, the person I tell will think I am less competent afterwards (34).

And that doesn't reflect on them specifically, it's always been the case. Friends, partners, extended family, teachers, colleagues... countless examples of the bar being lowered as though my sharing this truth changes me rather than them (35).

I'm also fearful of doctors, because they don't every understand #autism, they don't provide sufficiently nuanced pain management given my sensory differences, and because they also shame #autistic people. Like, a lot. It's embarrassing. For them. (36).

This means that I fly TO ANOTHER COUNTRY every time I need to see a doctor because I found a GP who does understand and who gives me the care I need without making me feel shame and who is kind enough to agree to this messed up arrangement. Same with my dentist (37).

See what I mean about access to healthcare being sucky for #autistic people? Seeing my doctor means a bus, a flight, a train, and a taxi. It costs £100s of pounds and takes 2 days. This is the only way I can be sure I will get access to the care I need. WHAT?! (38)