(sory this got really long 😅 )

Appreciate this response and I’m 100% on the same page about what you said. Question for you - was my response to the other commenter argumentative? I was trying to agree with them and expand on the point so if it came off differently I’d actually like to know that!

I agree in terms of teaching moments and having productive discussions about all of this stuff. It can be hard to not let the emotions get in the way sometimes when you’re passionate (perhaps I did in my other comment? Definitely something I’m always working on!). I think that of all discussions, especially online it’s too easy to have arguments rather than discussions and part of that is also recognizing who is worth engaging with and who is really just not going to be receptive no matter how respectfully you communicate. That’s a hard part of these discussions online!

I absolutely agree about the disconnection - that’s all very true to my personal experience and definitely on a wider scale. I work in the disability industry (also studied mental health and the people I work with often have comorbidities in mental health as many with disabilities do).

It’s such a big conversation with so many moving parts; society, culture, financial, government, lived experience that ALL need to be involved in how we move forward if we want to see real change. Part of the struggle, I believe, is that there are a lot of people who may see change as an admittance of being wrong - which sometimes, yes it is. Sometimes it’s been just being wilfully ignorant, sometimes it’s been based on the available research, it’s a sliding scale of errors. That acknowledgement that professionals make errors (not just in individual cases, including research limitations and the wider systemic issues) seems to be a really big barrier I see.

I believe acceptance is important - and complicated. I think of this in terms of lived experience. Briefly, I am autistic and was misdiagnosed for a long time with mental health issues and on the “conveyor belt” of the system for over 20 years. I have definitely held a lot of anger around my experiences that has lessened (not gone, definitely not no anger!) but I think my situation is not unique. There are many people with similar experiences and I believe that it would be both healing for us (and help with the acceptance) and extremely beneficial for professionals in the system for us all to work together. Again, for acknowledgement and to truly be open to how do we change things so future generations are getting the support that they need and the industry of healthcare is adjusting and innovating.

Anyway, it is a huge conversation and I could go on lol. I have not heard of this Soteria Paradigm - I will look that up now, thanks for sharing!

Lastly, I’m not sure about you but I’m not American. I’m Australian. I think this discussion is very much global and nowhere (that I know of!) has mental health, or wider, healthcare “right”. There’s a lot of progress to be made everywhere.

Diagnosis can and does get retracted, or added to, altered etc. But only some get the spotlight. The rhetoric around autism being particularly misdiagnosed or “over-diagnosed” at the moment is really dangerous.

Yep my first diagnosis was 2004 and from that point I was on the conveyor belt, the lab rat, the guinea pig - exactly as you say. It’s really quite awful to think about teenagers who labelled themselves as guinea pigs. I’m a writer and it’s quite confronting to go over my teenage poetry and stories and realize how young I was and already describing myself as a science experiment, lab rat etc.

Seroquel is horrible. I am obviously biased, I am glad if it has helped anyone reading. Everyone I knew on it put on at minimum 20kgs. Imo, it’s one that deserves a huge expose and discussion like adderal (or equivalent, we actually don’t have adderal here!) has.

I think, in my experience, young males were labeled as ADHD and/ or just “bad” kids whereas young females were depressed/anxious/bipolar and a little later borderline personality disorder and/or just “bad” kids. (Can I ask if your experience fit this?)

So the misdiagnoses go wide sadly and whilst medication absolutely has its place I do think it’s often too quickly prescribed. I think it should be the last resort, not the first! The shitty thing is that it’s also seen as part of the process so, as far as I know, there’s very little recourse to take around misdiagnosis for these kinds of conditions. Did you get any “justice” yourself?

My heart aches for us all honestly, who were diagnosed so young with any medical condition wrongly that has had long term effects. We deserved better and it’s one of the reasons I advocate for the next generation to receive the support (not just diagnosis or medication) that will give them the best chance at a fulfilling life. I work in disability, sorry this is long, I’m passionate about these discussions! Take care of yourself!

Psychiatry is in need of reform. But people need to stop targeting autism as the condition that gets over-diagnosed or misdiagnosed. All conditions are getting misdiagnosed and mistreated in certain cases. Focusing on just autism (and ADHD) is ignoring a huge part of the problem - which to your last point is that PSYCHIATRY needs reform - on all levels for all diagnoses and all the things you mention because there are so many issues.

It’s just “easy” to reduce it to autism and ADHD are being over-diagnosed because big pharma. It’s ignorant AF and peddling out the easy targeted rhetoric and misinformation only contributes to the issues that the whole health system has. It’s not a 2D picture, you got to look at every side to get any inkling of the full picture.

You spoke about autism and bipolar. You don’t get amphetamines for either.

No. It’s actually really well documented why there’s been an increase.

Previously women were seen as less likely to be autistic and often considered for other diagnoses without considering autism. This was also the case for POC.

Secondly, until 2014 ADHD and autism were exclusive diagnoses - if you had one you couldn’t have the other. Now they have realized that they actually occur together naturally diagnoses for both have increased.

Asperger’s is no longer diagnosed in a lot of places (only since around 2015, depending on location) therefore these diagnoses are now joining autism diagnosis numbers.

Access to healthcare, more education, more research than ever before and an ever increasing understanding that autism can occur with or without a low IQ.

Naught to do with insurance and everything to do with fantastic people who have done a lot of research to deepen the understanding of autism and include previously excluded people in a diagnosis that has no exclusions (any colour, any gender, any IQ level, any culture, any age).

Exactly. It’s targeted. All medical conditions have some level of misdiagnosis. Mental illness and developmental disabilities. But people love to just zero in one diagnosis for this discussion which means it’s targeted and there’s an agenda behind it.

Nobody is getting an autism diagnosis to back up their comorbidities of depression and anxiety to get medication. If anything, people having a diagnosis of depression and anxiety is going to be a reason autism gets overlooked. If you want medication, you aren’t going to go through an autism assessment (cost, time, stress, etc) and then be like “oh yeah you know how I’m autistic, don’t you think that means I am depressed too? Pills please!” If that’s your thing you’d just go for the depression.

Autism has zero benefit trying to obtain medication and actually is LESS likely to go straight for medication because if you’re autistic then the first thing to do is make sure you’re not overloading yourself and managing your sensory issues and such before even determining IF there’s a reason to try drugs. Autisms first line of defense is environmental factors, self care, learning how to manage your energy and capacity, accommodations. The last resort is medication. Ffs I wish people would have a clue what they’re talking about sometimes.

I had somewhat similar but my autism and ADHD were overlooked until I was an adult. I was diagnosed with bipolar, schizo affective disorder and a scattering of others. I was put on;

Efexor 400mg - still can’t get off this though I am down to 225mg

Seroquel 1300mg - which is an insane dose. I was 40kg (teenager) when I started this medication, a year later I was 70kg. I am still struggling with my weight and down to 100mg. For context, they say 600-700mg is the standard for a severe schizophrenic adult. I was an underdeveloped teenager (as in underweight, “failure to thrive”, lack of nutrition etc) and I was not experiencing psychosis. I had years where I could barely get from the bedroom to the lounge room because I was that sedated.

Lithium - 1000mg.

And I would be here all night to list every medication. Seroquel was the worst - it has significantly reduced my quality of life and my life expectancy and contributed to developing other health conditions.

So the issue is ANY misdiagnosis. That’s the conversation to have. Mental illness and neurodivergent conditions are all extremely difficult to get right and that’s an important discussion to have. But when we start targeting one or two conditions; autism and ADHD, that’s not a discussion in good faith - it’s a discussion with an agenda.

I have cPTSD - which I have been told is from drumroll the medical system (as well as childhood trauma). Medical trauma is a true cruelty because sadly, you can’t avoid being re-traumatised because you can’t avoid the medical system… especially when you have chronic conditions and disabilities. You literally have to continue engaging with the system that has traumatized you. Repeatedly. Medical trauma is another important discussion.

Lol it’s not healthy to have an anti autism diagnosis campaign to begin with. The issue is that EVERY diagnosis will have people who find out later they were misdiagnosed. So it is targeted to just be discussing one or two diagnoses.

Nobody’s diagnosing/seeking a diagnosis of autism to get meds. There are no meds specifically for autism. That doesn’t make sense

The comparison they are making is that there was a stage where all of a sudden a bunch of people were claiming to de-transition and people believe it was a kind of co-ordinated thing to “prove” that transgender was just some kind of fad. OL is saying now that they are doing a similar thing with autistic people going back on their diagnosis and that the strings are being pulled by those who want to “prove” that autism is being over-diagnosed.

Essentially, it’s the “strategy” being used that’s comparable. It’s designed with an agenda.

I’ll consider this discussion when people start discussing how often people are misdiagnosed and mis-medicated for mental illnesses and other illnesses. But whilst it’s just a narrow attack on one or two diagnoses (autism and ADHD) it’s not a discussion that’s being had in good faith. It’s one with an agenda.

So what did they think it was? Because autism is linked to genetics so…

It’s all bollocks. I’m autistic. I was misdiagnosed as bipolar for 15 years including psychosis and sedated heavily for 15 years. THAT has had a major ongoing impact on my life. But there’s no “wave” of people who come out about being misdiagnosed as bipolar…or borderline personality disorder - both of which are common misdiagnoses for late diagnosed autistic people.

There’s a comfort in knowing who you are and being able to look after yourself and play to your strengths.

Anyone, with any diagnosis or not, can find a “reason” or “excuse” to not try or to be a shit person. That’s not exclusive to literally any demographic or diagnosis. Lazy people exist, bad people exist, etc. autistic, non autistic, man, woman, young, old, mental illness, whatever isn’t the thing that makes a person lazy, good, bad, etc.

Oh trust me a LOT of peoples instinct is to accuse autistic people of being “fakers”. It’s something autistic people without an intellectual disability deal with regularly from general public and the government (various ones, I’m not even in the US) aren’t helping at the moment.

Good luck! Remember they are there to support you and your comfort/connection/communication with them is the most important thing for them to be able to support you effectively! ❤️

Yeah, that whole psychology article reads like something from the old days honestly. The language and just how demeaning it is sounds like the shit I read from when they used to say autism was “child psychopathy” and stuff like that.

This whole “appear to be articulate, thoughtful…” crap is just straight up ableism right? It’s missing the entire point, which is not that autistic people are pretending to be positive characteristics but may be abusive behind closed doors. The point that seems obvious here is that the NT and their friends don’t understand masking and fluctuating capacity. The point is that the general public still need a lot more education around autism… but instead they’re just like nah let’s just turn autistic people into the abusers, that’s easier. 🤷‍♀️

Yep, pattern recognition can be fun at times but the other side of it is actually really hard when it’s important stuff with big and harmful consequences.

Personally, I find my pattern recognition on a lot of things is put down to anxiety, trauma response etc. Sure, maybe that does affect it but that shouldn’t be an automatic dismissal/trivialisation. Discussions are good to have and when someone goes with “that’s your anxiety talking” it doesn’t encourage discussion, it shuts it down. Explore the thread of thought and the pattern collaboratively. Even if you don’t agree all the time, I think even just talking respectfully without those instant shutdowns through trivialisation, is a more productive way to go.

As soon as people give themselves permission to dismiss something that another person said just because “anxiety/trauma/autism/any other characteristic” we lose a LOT of voices - which sadly, is the exact society we do live in. Where it’s too easy to find reasons to not even engage and just erase certain people from important discussions.

Yes and if you go into pile mode then try to have some kind of storage boxes so once you hit the wall, you can put the piles into boxes to get back to. That’s what I try to do now because having the piles laying around just attracted more piles, mixes up in piles and just visual overload!

I hated cleaning my room as a kid and my folks would get so so mad at me that I would start cleaning and just get so overwhelmed that I threw everything out. I hate thinking about all the stories, poetry I had as a kid/teenager I just didn’t know how to organize so I threw it all out ☹️ so much creativity I threw away in those clean ups.

Yeah I don’t know about IKEA specifically (I don’t have much Ikea stuff) but I think flat pack furniture is either people who are intuitive and get it and those who struggle with it lol. Not necessarily dependent on neurotype however I think the frustration and dysregulation some of us can feel from it could be the thing more related to neurotype.

I can get “stuck” in a project and need to stop and take a break but my brain is hyperfixated I think even though I’m getting frustrated and that’s when I’ll end up approaching meltdown. That’s the neurotype part of the experience!

I struggle - rarely get from IKEA but with any kind of picture instructions I can really struggle! I think I need picture and written instructions - or video!

I always have to get my dad to help me, I always try because I want to be able to do it myself and right now! But 95% of the time I end up just getting dysregulated after trying for hours and call my dad and having to wait until he can have time to come over 😭

Some instructions are a bit better than others - some are awful and even dad ends up putting something in backwards and having to take it apart to put it back together lol.

But success - a few weeks ago I put my little 1 drawer bedside table together table independently! It took me a few hours over 3 days whereas I’m sure it would take most people like an hour or so but I was proud to get it done. Of course I put the railings in wrong the first time so had to disassemble and reassemble 🤦‍♀️

It’s frustrating because I actually enjoy some Lego and model kits (like the DIY book books) when the instructions make sense. I enjoy formulaic instructions but I don’t have the… like foresight? Like some people can know why they’re attaching the piece a certain way for later in the assembly but I can’t see that so I am often building without understanding the bigger picture - if that makes sense!