“Trendy” diagnoses

I have to respectfully disagree with some of it too.

While I am now diagnosed - I probably wouldn't be here if it wasn't for the idea of self-diagnosis. I'm not going into any more detail - but by 'here', I don't mean the board. The diagnosis in the end was just a rubber stamp, and didn't give me anything new. It was my self diagnosis and things that I read on the board here that got me through. Not a piece of paper.

Interesting post, Paper, but I have to respectfully disagree with some of your points.

Paper said:

Self-diagnosis actually harms those who diagnose themselves

In my case, self diagnosis and finding out about autism was my treatment. I get anxious or depressed sometimes, but I don't like taking prescription antidepressants and don't think therapy would help - I have my own ways of coping, which have improved after researching autism. The medical profession have told me I wouldn't get any help even if I had a formal diagnosis, and there are long waiting lists for mental health issues.

Paper said:

Self-diagnosis and over-diagnosis from paid diagnosis mills has real world harms to people with autism, in terms of diluting the limited help available and making it less likely for autistic people to get the help they need

I've never heard of "paid diagnosis mills" - I only used the screening tools used by medical professionals, read books written by experts/ diagnosed autistic people, and asked questions on this site. Yes, there is only limited help available, but putting everyone through formal diagnosis who believes they are autistic further reduces funds available and extends the waiting time, and not everyone can afford to go private. It's another reason I didn't insist on a formal diagnosis, because I know there are others who need formal diagnosis to access support they need and I don't - it would just have been a label, and my doctor assured me I could be referred later if that changed and I needed support. 

Finally, I just want to say that the term "diagnosis" is difficult for me, because autism isn't a disease and can't be cured. Also, having a stressful interview with mental health practitioners who may have varying levels of knowledge and their own personal views and possibly biases, isn't 100% reliable.

I don't care if people don't believe I'm autistic because I don't have a formal diagnosis, I know myself now and I know I belong here.

I'm afraid I don't agree and I have very black and white thinking about this. It will be unpopular because it looks like everyone in this thread is self-diagnosed, but I don't believe there is such a thing as self-diagnosis. It's a a logical impossibility, the nature and definition of diagnosis means you can't do it to yourself, particularly since you are not a trained qualified professional who is able to make diagnoses.

Alien0n3arth said:

they will not take you seriously, there high risk of hearing the stupid  “trendy” comments about diagnoses that everyone wants to have

This is in fact one of the negative consequences of the self-diagnosis crowd - it means autism doesn't get taken seriously any more.

Self-diagnosis and over-diagnosis from paid diagnosis mills has real world harms to people with autism, in terms of diluting the limited help available and making it less likely for autistic people to get the help they need - this already happened recently in Australia. It means people with autism don't get taken seriously and it's one of the reasons I don't tell people I'm autistic, because they'll just think I'm part of the trendy crowd jumping on the bandwagon. It won't be taken seriously.

There are enormous communities now on TikTok and Reddit and YouTube and other social media, of mostly self-diagnosed people who all have convinced themselves they have autism because of online questionnaires which have very high rates of false positives, and research shows are unreliable for diagnosing autism, and because they relate to memes and think autism is quirky or an identity. They share with each other various things that have nothing to do with autism and reinforce it in echo chambers (you get banned if you question any of it).

This is not good and actually quite dangerous. They're turning a neurodevelopmental disorder and disability into a club for people with the same opinions and personalities, and go out of their way to warn people to avoid doctors and healthcare professionals who might tell them they aren't autistic, and claim to know more about autism than the professionals who do the diagnoses. It's crazy.

Self-diagnosis actually harms those who diagnose themselves. Many autism traits can be characteristics of other conditions, from anxiety to depression to PTSD or personality disorders, many of which have treatments. If you diagnose yourself and avoid seeing a professional then you potentially deny yourself treatment and make yourself suffer unnecessarily.

None of this means any of you here don't have autism or shouldn't post here. Before I was diagnosed, I was on a waiting list for 4 years. I did not feel comfortable saying that I had autism then, because I didn't know whether I did; I just strongly suspected it. And it's fine to join autistic communities and get help if you feel that fits for you or that you might have autism. If the diagnosis was negative, I would have respected that. I would still have autistic traits, but perhaps not above the threshold for a diagnosis. I could still have related to the community and found benefit from it.

Not having a diagnosis doesn't mean you don't have autism, it just means you don't have a diagnosis. You might get one in the future, or have reasons for not thinking it's worth getting one. That's all fine. But you still aren't diagnosed with autism.

Great post - I totally agree!

I agree Lillibet, I'm out loud and proud to be AC woman too. I have other trendy diagnosis too, dyslexia and fybromyalgia. I'm lucky that I have very supportive GP's.

What really bugs me is the ignorance of groups who say they're there to support ASC adults and waht they really mean is make sure you have all the benefits you're entittled too and freak out when asked for something more. Even to the point of trying to give me digital solutions when one of my biggest problems is with digital stuff.

Thank you all for your responses, they really made me think and find more positives. 

Thank you so much! Yes, I will try! It would be perfect! 

Your words really are powerful! Thank you! Only recently I started connecting dots that me wearing earplugs minimises panic attacks and tics (diagnosed as Tourette, later proven to be misdiagnosed), so these tics are just a response to stress and sensory overload, also related to wearing jewelry. I’d there is nothing brushing my skin on my neck, shoulders and forehead (bangs) then I’m also calm not ticking. Once my husband gave me a beautiful tiny chain. This tiny chain caused me all day of excessive head shaking I thought my head will fall off and had a head spinning and felt awful. Only in the evening when I took it off I suddenly felt relax and stopped ticking with my head. He was upset that I do t wanna wear the jewellery,  tried to explain but I don’t know how to explain sensory issues and reactions to a neurotypical person. I think I might have dyspraxia too, my fine motor skills are ok, but gross- people laugh at me when seeing me not being able to keep balance , bumping into things, getting bruises and wounds which I notice much later and can’t figure out how I got them (insensitivity to pain). 

Lillibet said:

In my opinion, self-diagnoses is just as valid as a diagnosis, why?, because a solid 70-80% of diagnoses is self-diagnoses, and it is rare (with an actual professional who understands Autism, ADHD, etc and how it can present across different genders) that a self-diagnosed individual will not be correct about their theory.

Whilst I support self diagnosis, I do also feel it's important for those choosing that option to understand that some screening tools might lead us down the wrong path.

For example: in this 2021 study (UK-based), only 34% of the patients received an ASD diagnosis, despite 98% of them having scored above the diagnostic threshold on the RAADS-R:

"Retrospective case note analysis was used to evaluate the efficacy of the RAADS-R as a screening tool to predict ASD diagnostic outcomes in 50 service users of a NHS specialist autism service.

Results indicate no association between RAADS-R scores and clinical diagnostic outcome, suggesting the RAADS-R is not an effective screening tool for identifying service users most likely to receive an ASD diagnosis.

In conclusion, used as a self-report measure pre-full diagnostic assessment, the RAADS-R lacks predictive validity and is not a suitable screening tool for adults awaiting autism assessments."

https://pmc.ncbi.nlm.nih.gov/articles/PMC8452438/

Wow! Great first post Lillibet!

Lets call "trendy" diagnoses and all the other derogative phrases and comments out for what they are; Discrimination and Ableism.

In my opinion, self-diagnoses is just as valid as a diagnosis, why?, because a solid 70-80% of diagnoses is self-diagnoses, and it is rare (with an actual professional who understands Autism, ADHD, etc and how it can present across different genders) that a self-diagnosed individual will not be correct about their theory.

I find it shocking how many mental health professionals don't actually have a clue about neurodivergence, which goes some way to explain (but not excuse) how our presentation is reduced to 'behavioural symptoms' as a diagnosis (rather than symptoms of a much bigger picture).

I grew up under the assumption that I had PTSD, Anxiety disorder and panic attacks, when in reality (after doing my own research and referring for a diagnoses), I have Autism, ADHD, OCD, C-PTSD, Dyspraxia, and NEAD (and that's just in the neurodivergence category of diagnoses, without referring to sub-categories).

I will never understand the mindset of "why would you want to know as as adult if you're neurodivergent?". It is hugely important to know your neurotype, otherwise how on earth are you supposed to know 'yourself'?

I genuinely believe that the reason I have Fibromyalgia is due to the suppression of trauma from decades of undiagnosed Autism, combined with other childhood trauma (so basically trauma). 

I didn't 'know' I was masking, and I didn't 'know' I was experiencing sensory overwhelm on a daily basis (resulting in NEAD) because I didn't have the knowledge or tools I needed to keep myself safe and protected. Knowledge is power, and without it, we are denied a sense of agency, one that is vital for both wellbeing and identity.

I don't care if ignorant people deem neurodivergence as "trendy", people will always have silly outdated opinions. I am a loud and proud Autistic female, but I am also a cautionary tale of the females who allegedly 'slipped through the cracks'.

You're welcome

And thank you for your warm words! You helped me a lot! 

Lotus said:

it was because I don't fully trust the mental health "experts" and if I had been told I wasn't autistic I wouldn't have anything to explain why I'm different, which would have been awful

Yes! Absolutely agree. 
i was also told by other psychiatrist that I don’t need dx because it wouldn’t help me, but I do have some struggles managing stress so I have an appointment with a psychologist, if it’s related to trauma for example, then maybe it’s manageable. If it’s just me being so sensitive, maybe there are some coping strategies. Thank you for your answer. I would like to say - I don’t want to criticize people who use social media and learned about mental health from there, there is also a valuable content, but generally the trend of making those short videos making kinda fun of autism, ADHD, Tourette’s, OCD etc are actually harmful to those who struggle and then get such comments from professionals. This behavior was unprofessional btw. 

Hi, AH, don't worry about your post being long. I completely agree and empathise. I did say on another post recently that I think adult autism is highly under diagnosed, and I think this is part of the reason why. Some of us on here know we are somewhat "different", but for various reasons we don't get diagnosed, so we're not in the statistics and therefore the rate of autism in adults is not known.

I had a doctor tell me it wasn't worth getting diagnosed because it wouldn't get me any help, but that wasn't the reason I didn't go for it (I wasn't expecting help anyway) - it was because I don't fully trust the mental health "experts" and if I had been told I wasn't autistic I wouldn't have anything to explain why I'm different, which would have been awful.

When I first came on here I was astonished at how much I identified with autistic adults, and so grateful for the advice and support I was given, and learning about autism has helped me adapt and cope better. I try to repay that help by supporting others here when I can.

You are one of us, so please don't worry about what anyone else says - we're here for you.

Just an idea - but do you think that there might be unofficial 'meet ups' where you are?

maybe worth a look - there's a woman's Zoom meetup.

https://www.meetup.com/

Search autism and where you live (location won't matter for zoom)

There are many attention seekers out there. I don’t need attention or popularity, I only need peace. Unfortunately my brain is not giving me peace constantly chewing on something. I wish I could join a local support group, I can do that only with diagnosis, where I’m living. I also know that if I get dx, I would have told my husband only. Others, my whole family, colleagues at work etc wouldn’t have known that.

I actually don’t really care about label. I just know that only with this label I can enter the local community. Without it I will be alienated human for ever. 

The thing that bothers me most about the "just looking for attention" is that most of us wither under any sort of attention. I can't stand attention from my own family - never mind the big wide world. I think the goal is just to get some kind of support.