Being part of the autistic community

I agree that calling those of us diagnosed much later in life not genuine is stupid, but I think there's a level of shock at how quickly things have changed, don't forget that these days people get taught about Margeret Thatcher as history, whereas to us who lived through her premiership just see it as old news.

Personally speaking, my relationship with other Neurodivergent people has always been particularly unpleasant until recently. Two of the people who made it (seemingly) their mission to cause me grief during Secondary School were both Autistic. My mum tried to introduce me to an 'Autistic Society' back during the start of Seconday School but I felt so excluded and disconnected that I stopped going after a couple of sessions there. 

If it wasn't for my lovely ex girlfriend and D&D friends i've made while at University, I would've found it very difficult to consider even looking at a place like this forum for support. It's hard to put into words, and my CBT therapist I used to visit would continually urge me to find a like-minded society much to my annoyance, which didn't help. 

So no, you're not alone. Unfortunately even though we may fill some similar mental health checklist boxes that is far from a guarantee of liking or clicking with someone sadly.

I've just realsied that the NT 's give me guff generally for my Autism, but some strident members of this community gave me guff, then mangement effectvely ostacised me*, simply for being ME.

All my outgoing P.M's are being stopped all my posts are being delayed for about three days, so I can't function here, allthough I've not given up trying yet you'll notice. I'm not opposing the promised termination of my account on the ninth, as it will save me the mental energy of having to make the decision to leave, which I will have to do for obvious reasons, not least because the way my membership here is operating now is to use a buzz word, unsustainable.

You're effectively asking me to keep begging to be allowed to speak!!

I'm going to re-enter the NT community "as eccentric and possibly even a bit weird or crazy" it's a lot better than whatever this is. Especially now if things get eally gnarly or unreasonabel with the NT's I can play the Autism card as a last resort... I'll just use the knowledge I now have about Autism and how it presents to make sure things never get that bad.

Pro tip, from the 59 years I didn't know I had Autism and thought it was a level playing field: 

If you feel a "meltdown" of some sort coming on, and you are surrounded by NT's, then just find an excuse, and relocate quickly, passing through several doorways if possible, (smoke break, toilet break, sudden illness, "mens problems" etc.) then return to the situation as soon as you have a plan, or figure out a good excuse for why you didn't come back. It's better to have peoel who are not close to you wonder what's wrong with you, than actually KNOW, I think.

You should see this in a few days...

I think this is not just about autism though. From what I see of it I think it is just a generational thing where the newer generations "diss" the older generations for being irrelevant.

I've seen it with gen-X, millenials and now gen-Z as well.

It seems to be human nature to consider the older generations as irrelevant as they lack our lived experiences to relate to.

With age I suspect they will experience the same from the next generation and will start to see the error of their ways.

The problem with youth is that it is wasted on the young!

TheCatWoman said:

I think it could be due to the difference of experience between those who've been diagnosed early in life and have had "help" and those of us who are older and had to muddle through as best we could

There's the stupidity of those born after the diagnostic criteria  were broadened, and thus getting diagnosed at a young age, declaring as 'not   genuine' those of  us born decades before that time.

I think lived experience is getting catagorised and if your lived experience dosen't fit with what the often self proclaimed experts think it should be then you're either misdiagnosed and wrong or just wrong. I think it could be due to the difference of experience between those who've been diagnosed early in life and have had "help" and those of us who are older and had to muddle through as best we could. The autistic world is changing all the time, new discoveries and understandings are happening, but the problem of needing to catagorise remains, this will inevitably mean that some of us are left out and in effect disenfranchised. I don't think it's even helpful to think of the need to catagorise as an NT/ND dichotomy, as many NT's hate catagorisation and many ND's love it as it can help make sense of the world.

People can be horrible when they percieve someone's differences and will try to reduce that persons experiences to being about that persons percieved inadaquacies, when really all it is, is different.

Thank you for sharing that A. I hadn’t thought about that but definitely want to reflect on it some more. 

HMO said:

Like my lived experience doesn't matter

For what it's worth, it matters to me.

A good defence for the hurt that others cause is to be able to not care about those who are unimportant to you. This takes time and a good mentor to stay the course, but it does work well - or at least it works well for me.

Engaging with these sort of unwelcoming people to have any sort of arguement reminds me ot another saying from  George Bernard Shaw.

"I learned long ago never to wrestle with a pig. You get dirty, and besides, the pig likes it."

I take your point, but I was made to feel so unwelcome that went beyond "we don't like you", it was "you're not worthy of basic human respect anymore" and I now expect that wherever I go. Like my lived experience doesn't matter.

It is a very valid point you make.

We do have the ability to validate one anothers lived experiences though and this brings comfort (what is the expression, "a trouble shared is a trouble halved").

So in light of the saying, we just got a fine for speeding... Cash will be fine

It took me a long time (alarmingly too long) to realise that only interacting with other autistic people is not really a healthy way of living. 

Bunny said:

Unless you've accidentally got these the wrong way around, I don't understand your logic

I did get these back to front - thank you for correcting me.

This to me means that there are a lot of diagnosed autists out there who would not meet the newer requirements however. Before under DSM-5 you only had to match one of the criteria whereas now under the replacement DSM-5-TR, you have to match all criteria.

The replacement for these (IDC-11 if I recall correctly) also has a very long list of criteria - some 18 in total) that need to be met for a diagnosis).

https://icd.who.int/browse/2024-01/mms/en#437815624

This does set off some alarm bells - if the government get wind of this then they may decide they can get rid of loads of potential PIP claimants by making them re-test and fall out of diagnosis.

The reason I raise this point is the government (of whatever political leaning) seem to be always pushing to reduce claimants for benefits, so this would be a low hanging fruit for them. Kick someone off, make them wait years for a re-diagnosis and at worst they save years of PIP payments.

It is only hypothetical but I think the logic is there, and from the governments behaviour towards disabled people, I think this quite within their grasp.

I've not personally experienced the validity part, but it's that sense of "autistic people must be perfect". I thought people who have had their character unfairly dissected would understand, but seemingly not.

I’m observing the wide debate and what I noticed (maybe wrong, if so correct me) - being a part of autistic community means you are often being scanned for validity, which I find toxic, also there are some or maybe many, I don’t know, who themselves say, that there are already too many autistic people- those diagnosed and those not diagnosed but self identified. I think it might be something like- being autistic means you don’t fit in, don’t belong, you are the unicorn and somehow maybe subconsciously get used to it. And it may cause some sort of confusion or disappointment when the unicorn finds out, they are actually not such unicorns… there is a quite wide community of the unicorns. Everyone is unique but often sharing very similar experiences. I’m sorry if it triggers anyone. 

Iain said:

To me it does indicate that a number of the people who didn't reach the criteria under DSM-5 may reach it under DSM-V-TR.

Unless you've accidentally got these the wrong way around, I don't understand your logic.

Under DSM-5, if their assessors had misunderstood the meaning of the text, some people could have been wrongly diagnosed as autistic if they only met one or two of these requirements, all of which form part of criterion A, and all of which should have been met ...

"deficits in social-emotional reciprocity, in nonverbal communicative behaviors used for social interaction, and in developing, maintaining and understanding relationships"

... along with meeting all of the other criteria (B, C, D, and E).

The DSM-5-TR revision clarifies that a diagnosis requires (and was always intended to require) that they meet all of the points in criterion A.

À few powerful people who controls what goes on here. 

I see that somewhat. In many ways from what I've seen here. I've sent a fair amount of time in classrooms, and have sem how classes a quite a 'personluty' of their own, and I do see that happening here. However, there is more tolerance for discussing topics of special interest, and luckily some of these special interests are sometimes mine, but it's clear not everyone thinks the same, leading to clashes, and that there so seem to be alliances, with some taking a leader role, and in and out people. I'm just coming to the conclusion that human nature is pretty much the same, whether neurotypical or not.

The people who have mattered most to me maybe hit some kind of a sweet spot of being interested in similar things, being creative, non conformist to a degree, with a touch of neurodiversity, and curious about how we ended up on this planet. 

Bunny said:

There were a couple of issues with the wording regarding autism diagnoses in the original version of the DSM-5. These were remedied in the DSM-V-TR (2022).

It is good to see the guidelines are undergoing continuous improvement.

In your opinion do you think this could mean previous diagnoses (where people did not meet the ALL criteria) should be re-performed?

To me it does indicate that a number of the people who didn't reach the criteria under DSM-5 may reach it under DSM-V-TR.

Iain said:

There are several criticisms of the DSM-5. One major controversy is the idea that it may overdiagnose

I feel it's important to offer some reassurance to others about this point, with specific regard to autism (the manual also covers a host of other conditions).

There were a couple of issues with the wording regarding autism diagnoses in the original version of the DSM-5. These were remedied in the DSM-V-TR (2022).

This extract explains it better than I can: 

" The DSM-5, released in 2013, indicated that an autism diagnosis requires “persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following”: deficits in social-emotional reciprocity, in nonverbal communicative behaviors used for social interaction, and in developing, maintaining and understanding relationships.

The first text revision in the new DSM-5-TR adds two words to that description: “as manifested by all of the following.”

The addition could help to dispel “a serious ambiguity” that left many clinicians confused about whether a diagnosis required any or all of those deficits, says Michael First, professor of clinical psychiatry at Columbia University, who serves as an editorial and coding consultant for the DSM-5.

The second change swaps out a single word describing the “specifiers” that can accompany an autism diagnosis. Whereas the DSM-5 wording instructs clinicians to specify if a person’s autism is “associated with another neurodevelopmental, mental or behavioral disorder,” the DSM-5-TR version reads: “associated with a neurodevelopmental, mental, or behavioral problem.” It still instructs clinicians to use additional diagnostic codes whenever appropriate, but it no longer requires specifiers to be diagnosable conditions.

This second change now makes it possible for clinicians to indicate co-occurring problems, such as self-injury, that don’t “rise to the level of disorder,” First says.

The first revision more accurately reflects what the DSM-5 working group always intended, First says. “People send emails to us saying, ‘I don’t understand how to interpret this,’” he says. “Those are the people who bothered to write in to us, so God knows the actual impact” on diagnosis and prevalence numbers.

There are no data, but the impact has probably been minimal, says Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles. “Hopefully, almost everybody making diagnoses got the message eventually that all three were required, even if it was slightly unclear.” Lord is a member of the DSM-5 neurodevelopmental disorders committee, but she did not work on this text revision.

“It seems like more of a theoretical concern,” Carpenter agrees. “I have never heard of someone going by the ‘any’ definition.” "

From: https://www.thetransmitter.org/spectrum/dsm-5-revision-tweaks-autism-entry-for-clarity/

HMO said:

I side-eye anyone who says the autistic community in general is wonderful.

Oh we are just people too at the end of the day and there are plenty with bigoted views, bad behaviour and mean personalities - just like any other part of society.

But they are all welcome here so long as they play by the rules so it does encourage a degree of social cohesion.

I'm not sure I could put up with too much nicey-nice bahaviour anyway as it seems just too fake. Odd coming from someone who masks I know, but I guess we can all be paradoxes sometimes

Bunny said:

Both classification systems are used here.

This does seem to be the case which is causing some of the confusion.

I note that the DSM5 uses levels while the other system, ICD-11 does not, looks like it is being phased out by 2026 in the UK:

https://healthcare-newsdesk.co.uk/for-information-preparations-for-the-implementation-of-icd-11/

The next revision of the International Classifications of Diseases (ICD), ICD-11, is now approved by the WHO and will be mandated for use in the future. Our assumption is that ICD-11 will not be mandated for use across the NHS in England before April 2026

I can't find any info on whether the NHS have formally adopted DSM or ICD but the following site implies that it ICD which is the more dominant one:

https://www.ncesc.com/geographic-faq/is-the-dsm-used-in-europe/

Does the NHS use DSM-5?

No, the DSM-5 does not have an official status in the NHS  in England. However, DSM diagnostic criteria are sometimes referenced in clinical guidelines due to the prominence of the manual in scientific literature.

What is the controversy with the DSM-5?

There are several criticisms of the DSM-5. One major controversy is the idea that it may overdiagnose and pathologize normal behavior and mood patterns. Additionally, some argue that the manual overly medicalizes conditions, potentially leading to unnecessary treatment and medication.

I know NHS Scotland have formally adopted ICD-11 in 2022 so there will be no levels used there.

I'm not arguing over anything, I just went down a bit of a rabbit hole on researching this today and wanted to share my findings and illuminate the subject.