@Loukas
Thx Loukas.
I'm a psychiatrist specialized in personality disorders but this diagnostic problem is so common that I and my co-workers had to educate ourselves in autism.
@dyani thank you, I appreciate that. No, I wasn't aware of that article or the writer at all. Maybe some of their ideas had filtered to me through other people.
@Loukas To be clear I love these ideas and I did not mean to imply you copied them! Nor do I really frown at the idea of "copying" in writing since all creativity is copying to some degree. The line of thought you wrote about deserves to be spread around, in my opinion! Btw, he is the author of the book Unmasking Autism.
@dyani oh, I didn't mean I thought you were saying that! I just always try to be as transparent as possible and also I forget a lot of things because of ADHD so I want to make sure I am open about how ideas float around.
@Loukas oh good I'm relieved! And yes, ADHD is another reason I don't give much credit to "copying" because I can't remember every single source of everything anyway! Just like you say. 🙌🏻
Getting an official diagnosis in Germany is expensive, exhausting and often not helpful, so I'm not seeking one.
I am holding a day job (and counting down the days to retirement), so there's little I can gain from an official diagnosis and possibly much to lose.
Even so, learning to respect my needs as Autistic person is already changing my life. And learning to make good use of my amazing abilities is... way beyond life-changing.
It's really shocking how easy things get when I actually use my brain the way it works best:
Breaking down (even everyday) tasks into small steps, then visualizing each step, optimizing them in my mind and then DOING things the way I saw them is... empowering.
It works so much better than the "just do it!" that I got to hear all my life.
And once I have a pattern or system for a task, I can easily repeat it.
Funny enough, I always thought that was "male brain". (Cis woman here.)
This is the first in a series where I try to sketch out a political economy of autism and disability in general, from a disabled liberation perspective.
If you thought it was worth reading, please share.
@zaxxon@Loukas I worried for ages, going between "Yeh, I'm ADHD" and rejecting it completely. I grew up with so many people telling me I was just like their ADHD relative.
What cinched self-diagnosis as being valid for me was when I saw a psychologist and they refuted my ADHD because I could sit and play computer games all day long. 😖
Interesting.
FWIW. I was diagnosed Bipolar 7 years ago, finally realised I was ADHD a year ago and tested way positive. So I think I validate your conclusion.
@Loukas If I did self diagnostic I would never say I was autistic.... just myself.. but I knew something was odd about me but not that.
I actully did a webtest that said I was not neurodivergent.... and actually did not even fit in with other autistic people in a group at Attention....🙄
@Loukas Neurotypical people have no reason to self-identify as autistic because they are capable of correctly identifying that there are no significant social rewards that come along with the Dx.
@Loukas Love this. I am writing my thesis about this and what resonates with me there is the need to both widen and maybe also rename "diagnosis" to take that emancipation into the hands of the people who identify as neurodivergent.
The way these diagnostic labels are, often in complex ways, putting up walls, is a huge important discussion. So glad you addressed the gender issue, there is also a big class and race issue there.
@Loukas Also really relate to your story, I also spent 20 years on medicines for GAD that never worked and made me feel very bad in hindsight. I don't have GAD, so no wonder.
I have decided to never seek an official diagnosis partially for this reason, as the label that was put on me at age 18 has robbed me of 20 years of my life.
And I also fully believe that we need to take back the right to define from the normatively aligned professionals if we want to see "real liberation".
@Duusi thank you I greatly appreciate your comments.
In the next articles I go on to describe how I see the diagnosis system and ablism as part of a bigger intersectional system, which fits together with white supremacy as well as patriarchy and functions in a similar manner.
I think we are seeing a move away from simple medical diagnosis towards a civil rights movement or liberation movement model, and I hope this writing can help along the way.
@Loukas This take is extremely invalidating for people who don’t have the energy etc. for self diagnosis and there sought support with finding out they are autistic.
There are cases where people have gotten an autism diagnosis without doing any self-reflection at all, but I argue in this piece that the internalisation of a diagnosis is crucial to it being useful and a pathway to freedom.
And wondering whether you are autistic and seeking a diagnosis is already a form of self-diagnosis.
@Loukas
I had one diagnostician (part of a team) tell me they ruled out autism (although I already had the diagnosis confirmed by another), because although "the inner experience fits" they didn't "see it". 🤦
@oxytocinated Yes I take your point. What I meant was that official diagnosis, at best, offers little better than self-diagnosis with extra steps. My argument is against the idea that official diagnosis carries some kind of amazing validity, not to argue that it does indeed offer crucial extra steps. Maybe I should edit the article to express this better.
I have thought about building a loose group of interested people to build better evaluation tools.
Would you be interested in joining or spreading the word?
@Loukas Also I think that in many countries you can’t have some kind of support if you don’t have an official dx. I don’t have one in the country where I’m living right now because it is useless not having an intellectual disability, and I can’t afford it. But in my birth country it would be different. And for many of us it gives a validity for their relatives, but yes I know that it doesn’t work 100% of the time, and it can help also with imposter syndrome.
@adelinej@oxytocinated I agree that those restrictions exist, but they are social restrictions. They are based in people's attitudes and in the power structures of society, which are ablist.
@oxytocinated@adelinej Yes, so the crucial aspect of the medical diagnosis is not its medical validity, but in the social power wielded by the diagnosis.
@Loukas Really good piece. Interested to read your thoughts on 'community diagnosis'. My diagnosis arrived as a self-diagnosis followed by an official one; it's different for my son, who's never been able to 'mask' and whose diagnosis means his experience of 'the community' is quite different from mine (attending specialist school, having therapies etc) - it's a spectrum in more ways than one!
@eleanorrees thank you, I appreciate that. I think discussions around community are crucial and in the next article i try to make some observations and definitions that can allow us to do more helpful work.
@Loukas Over the years, I've been prescribed with various types of SSRIs for anxiety which just make me a lot worse. Recently, I've taken online Autism tests and quizzes and always score very highly, way above the threshold. I have been advised to apply for a formal assessment, but I wonder if there's really any point 🤔
I guess it depends on your accomodation needs. If you live in a country that offers accommodations (assistance, welfare, tax reduction etc.) an official diagnosis might be worth it.
Also if you have adverse reactions to medication in general, which is common in autistic people, it can help to have it on file (though many medical professionals don't know about it anyway and might disregard it).
@oxytocinated Honestly, I've not even looked into the support side of things. I am self employed because that works well for me... if I have an off day, I can curl up in a ball and wait things out.
Interesting that you say that… I have very strange reactions to medications, smells, foods, drinks etc. I'm just very sensitive to all kinds of things lol @Loukas
I usually need a lot less of any medication and have even slightly been made fun of by nurses in a clinic because of it and a psychiatrist deciding "that's so little, then you don't need it anyway" which led to 2 weeks of extreme withdrawal symptoms 🤷
So yeah, it's good to know and communicate in any case.
Regarding accommodations: At least here in Germany you could even get some when self employed. Don't know how it is in other countries.
@oxytocinated That's interesting about needing a lot less medications... That's been my experience with anti-histamines... even ones that don't cause drowsiness can wipe me out for an entire day. Quite a few things are slotting into place for me, the more I look into autism. My mind is blown.
I will look into what help is available... The UK is notoriously bad for supporting self-employed people anyway. Thanks for the info! @Loukas
@andycarolan I would say the major difference lies in how a diagnosis, self- or medical, changes how you treat yourself and how you understand yourself.
@Loukas I flip flop between thinking it's a good idea, and being scared rigid at the very thought of going through the process of a medical diagnosis lol.
@andycarolan@Loukas IMO medical diagnosis is a total waste of time. You can just lie to clinicians and say you were formally diagnosed. I have been, but it’s not like anyone has ever asked to see the paperwork. I learned nothing about myself or ASD that I didn’t already know. I would actually say it was the largest single disappointment of my life.
@sidereal Thanks for telling your experience. It does seem quite a daunting process from what I've found out about it. Nobody knows your own mind better than you do afterall. @Loukas
@andycarolan i can say that a medical diagnosis was very exhausting for me, but that the process of improving my life happened before I got the medical seal of approval.
@Loukas love this. I’m self-diagnosed AuDHD. Took me a long time to get over the ableism I’d internalised and take myself seriously enough to advocate for what I need. I can’t work in an office environment - it’s overwhelming and I often end up being bullied - so I’ve had to spend over a decade carving out a self-employed existence simply so I can get through the day. But it’s only these past couple of years I’ve come to understand WHY I had to do this. Please keep writing these important words - the better we educate the wider world on this the better for everyone 🙏🏽💙
@SophieMcKeand thank you, I appreciate your words a lot. In the next articles in this series i also try to pick apart that ablism, where it comes from, what powers it and how we can dismantle its power.
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