“Trendy” diagnoses

I've been reading a lot of messages on this thread. I don't know if the correct terminology now is "self-diagnose", "self-identify", or something else. But I feel now I should clarify what I mean for myself.

1. If I ever have to describe myself (which is rarely), I choose my words carefully. I've never said I am autistic because I diagnosed myself. I'll say something like "I suspect I am", or "it is possible I am because of my daughter's diagnosis". If describing my daughter, I will say that she is autistic because she has an official diagnosis, which to me seems correct.
2. I've never asked for any help or support because of my choice. This conclusion I came to helps me identify areas in my life where I might struggle and then find ways to work around it myself, rather than expect the rest of the world to accommodate me. That in itself is a world view I have anyway, I've never really asked for help with anything and just thought I had to figure things out on my own.
3. I've chosen to not go any further with an official diagnosis because I feel that I understand enough about myself to carry on better now, I don't think I have significant problems navigating life (just a lot of inconveniences) and I'm not sure what else there would be to support me further, I just don't see the benefit for me personally.

This 'chicken or egg' analogy was exactly my battle when doing extensive research before diagnosis, I was trying to decipher which came first, the trauma or the autism, due to the mass overlap between symptoms of trauma and autistic overwhelm.

The clue was found in 'what' was triggering the symptoms (a vital link often overlooked in deciphering between the two). Thankfully the psychiatrist who carried out my assessment was really well trained in neurodivergence and trauma, and she stated I didn't present as a typical PTSD profile, but instead as a traumatised autistic, and those words were what I needed to hear, they were specific enough to stop the analogy dead in its tracks.

I guess in my case, I needed a trained professional to undo the damage that untrained professionals had inflicted by trying to make me a better version of something I never was (e.g. reenforce the mask).

The tests were helpful, but they require you to be honest with yourself, which in a high masking neurodivergent, my take some time.

Well said!

...and we love you all the same

also if there was a community for eveyone who thought that they were different to the rest of the community - there would be a community per member. 

Anodyne isn't my colour.   Normalcy by current standards = is not me.

My communication is often obscure and difficult to interpret.......for most.

Change is generally a problem to me.......so sue me?

I can meltdown and/or burn out.

I do wish there was a community somewhere for an odd number like me.

I will continue to seek.

SpikeyMark said:

You may think that I am a platitudinous member - I don't know. I've never ever seen a platitude posted by any members

You are not platitudinous (the word of the day) and nor are any other members, in my view.

Do you mean the address still on the website?

National Autistic Society
2^nd Floor
Weston House
42 Curtain Road
London
EC2A 3NH

I find it hard to follow your post, Number. You may think that I am a platitudinous member - I don't know. I've never ever seen a platitude posted by any members, which makes me think that I may be one of them. I think carefully about everything that I post and try to take a lot of things into account (seen and unseen and maybe too many things) which may hold me back somewhat.

But, I don't know how your points answer the question. I'm totally confused.

Though I think that we do have one thing in common - we both just type and don't go back and edit. 

.

I’d love to be able to visit a support group and meet others similar to me. It would be good to share experiences and help each other. Sadly, I’ve never been able to find such a thing close to where I live and the NHS is woeful in this regard. No interest or help at all. This forum is the closest I’ve come.

Excellent post, Lillibet

Unfortunately I think you are right there. There is not much support post diagnosis. Still, for many, at least they are no longer in the dark about what is going on with them, and some workplaces are starting to recognise that autism can come with many virtues. 

Hi Pixiefox, I completely agree that autism (and other neurodivergences) are highly under diagnosed! The medical system is still playing catch-up to its own biases; initially autism was believed to only exist in boys (a.k.a they would grow out of it by the time they were men), then 'eventually' medical professionals clocked that females can have it too, It wasn't until 2013 that medical professionals realised people could have Autism 'and' ADHD, and its only coming to light in recent years that female autism may present differently to male autism (although, I would argue that males could have the female presentation of autism and vice versa).

Countless females have been mis-diagnosed over the years, usually with something psychiatric based (popular ones being borderline personality disorder, bipolar disorder, schizoaffective disorder, generalized anxiety disorder [i'm sure there's plenty more too]). The medications prescribed for these would only make emotional regulation worse!

I still remember the quote from Dr.Daniel Amen I came across when studying "Psychiatrists are the only medical specialists who don't look at the organ they treat. Cardiologists look, neurologists look, orthopaedists look, but psychiatrists guess."
It's horrifying when you consider how easily medication is prescribed (e.g. prescribing antidepressants which are designed to increase serotonin levels, without first measuring the individuals serotonin levels, which could easily cause serotonin syndrome if their serotonin levels are high), the brain should be examined first, especially given that autism markers can allegedly be spotted with 'fast brain scans' with up to 90% accuracy (which is surely better than a guess).

I had a similar experience to you with Doctors being curious why I wanted to be assessed for Autism so late in life; they really don't understand the impact it has on us by simply knowing who we are (and, in my case, why I wasn't responding to neurotypical medical interventions for trauma). It took me two years to go from self-diagnosed to seeking diagnoses because I too had major trust issues with doctors (I didn't want to be hurt by them, or held in a medial facility against my will, etc, which are perfectly reasonable fears to have, even today).
It was such an eye opener when I not only had the word to describe the 'what' (Autism), but also 'why' I struggled to explain the struggle itself (Alexithymia). Understanding 'masking' helped me to recognise sensory overwhelm, and understanding nervous system regulation got me on the correct medication to prevent NEAD (non-epileptic attack disorder).

I understand where you're coming from in terms of the actual phrase 'self-diagnoses', as diagnoses is a professional term; so perhaps 'self-identified' might be the better phrase for non-diagnosed neurodivergence.

I am diagnosed Autistic (etc), but self-identified ADHD (technically my psychiatrist 'strongly recommended' I approach for an ADHD assessment, which pretty much says all I need to know regarding that).

"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." --- I assume you must be referring to bogus questionnaires, similar to like personality quizzes similar to 'what kind of potato are you' or something, because the psychometric tests (AQ 10/50, EQ, SQ, RAADS-R, Aspie Quiz, CAT-Q, RBQ-2A being the main ones) are used in the assessment process, so if they have high rates of false positives, why would the professionals use them?

"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."---- This is also inaccurate. There aren't a great deal of diagnosed Autistics (in terms of late-diagnosed) that didn't start from a place of self-diagnosed (self-identified) and in many countries it is simply too expensive to seek a diagnoses, and sometimes dangerous to do so (e.g. cultural perception of Autism). I agree that trauma and neurodivergence share many characteristics, but from my experience, I was actually wrongfully diagnosed with PTSD (I have C-PTSD, but the 'professional' who diagnosed me wasn't trained in neurodivergence) so my neurotype was reduced to behavioural symptoms, and I receive zero support during vital developmental years, and was put on medication that made me worse; my point being that having a professional diagnose you doesn't guarantee lack of harm. Also, on a side note, most trauma therapies tend to be ineffective because they are designed for top-down processing neurotypes; Trauma and neurodivergence tend to lean toward bottom-up processing as standard, and the treatments for Autism (in terms of emotional regulation, quality of life, etc) and treatments for trauma are exactly the same (e.g. Cognitive Behavioural Therapy), so there really isn't any harm being done.         

"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" --- There is no help for Autistic adults in my experience (outside of benefits), and any help available requires an official diagnosis, so no diagnosed person is being denied the help they need on the basis of a self-identified person; however, we are all being denied the help we need due to lack of funding and lack of cultural neurodivergence understanding/acceptance (both medically and public), and I would argue 'that' is what has given rise to chat rooms, forums, and social media platforms, etc, regarding neurodivergence.

In a nutshell, how people choose to identify is their business, it doesn't do me any harm, and if it brings them peace and allows them to know/understand themselves better and how to keep themselves safe and healthy, then it can't be bad.

Welcome to the club.

I very much shouldn't have opened comment on this. It's unnecessary for my head on a rainy Sunday. Now im getting an automated lock out via orange banner

Ciao.

In fact the whole "neurodivergent" movement makes me feel a bit queasy at times. There are many people (older generation than me) who are aware they're probably autistic but have "done alright". I think some of it all is to do with how society has changed. Life is faster. Lives seem to be more conspicuous now and people seem to need some sort of identity which I don't see in older people. There are an awful lot us about, hiding in plain sight. Maybe I'm old school. Maybe "the spectrum" is "autism" at one end and "neurotypical" at the other. I know and have met people who communicate similarly to me but are not autistic and I wouldn't have them down as completely neurotypical either.

out_of_step said:

For every person shouting loud and proud on tiktok,  there are many more just getting on with their normal lives. This social media aspect  (while it does have a knock on effect because many lead their lives THROUGH it) is just one representation of a certain group of people.

I agree with this to some extent however....resources are not infinite and some people need more help than others if we are talking about adults.

As for many diagnosed in adulthood - there IS no help available, one must learn about oneself and advocate for oneself, and make ones own adjustments. It's hard work but it's better to rely on yourself than others. (Even those who have good intentions).

I have a piece of paper because I am so high masking (and on reflection my thoughts ARE so black and white) that I didn't know for sure whether I was or wasn't. I couldn't see how it was having a "significant impact on my day to day life" because I didn't know any differently. I didn't think I'd be believed by those who were trying to help me. Once I had the paper,  this made NO difference to mental health therapies I was receiving at the time. Communication differences which are what autism is fundamentally sbout in terms of diagnostic criteria don't change and are not adapted for bease they can't be. Because we communicate, fundamentally differently.

We know our own reality whether we are diagnosed or not.

For every person shouting loud and proud on tiktok,  there are many more just getting on with their normal lives. This social media aspect  (while it does have a knock on effect because many lead their lives THROUGH it) is just one representation of a certain group of people.

This topic is such a minefield for my head, I'm going to leave it there. 

My final word on this thread. I wish that I had seen this video yesterday.

In episode 5 of the National Autistic Society Scotland's "Spectrum Sessions", 17 year old Nuala McDonald puts this much better then I ever could have at 47:48

https://www.youtube.com/watch?v=hjMDA2g_Nz8

"I found that it was the diagnosis - the bit of paper that allowed the child to get help. I think that there should be more of a mentality of 'if this kid needs help, give them help.' It doesn't matter if they have a bit of paper telling them that they officially need help, just help them as much as you can."

Very wise words from someone so young. (I recommend all these videos, by the way - there are some very interesting people interviewed. actors, authors, etc.)

SpikeyMark said:

Unless god himself comes down and tells us who is really autistic

Trump is rather busy at the moment.