AIBU to think that there are adults trying to push for an autism diagnosis, that actually have a personality disorder instead?

[surelycantjustbeme]

Someone I know is currently pushing for an adult autism diagnosis. The “autistic traits” she talks about were never present in childhood and seem to have appeared only in adulthood.

From what I’ve read, that pattern can sometimes fit better with something like borderline personality disorder, where there can be a lot of symptom overlap but the difficulties are more tied to relationships, emotions and past environment, and often show more clearly from the teens onwards rather than right through childhood.

I’m posting here because I can’t really talk about this in real life, and I’m genuinely curious whether anyone has come across similar situations. Has anyone seen someone really push the idea that they’re autistic when it doesn’t quite match their history?

For context, this person has always absolutely refused to work or take on any responsibility, and whenever they’re asked to step up, they suddenly lean on “I’m autistic” as the explanation. I obviously can’t diagnose them, but I’m increasingly wondering whether something like a personality disorder might be a closer fit than autism.

Everyone who knows this person knows there have never been any such symptoms in childhood, it's only recently where responsibilities have become a real demand and it's almost being treated as a get out of jail free card.

I know people who have genuinely severely non verbal children, and I also know people who have children with genuine ADHD and are on the spectrum, and the childhood challenges it presents. So please don't read this as me being insensitive in any way.

Am I being unreasonable to think that there could be adults with personality disorders, trying to push for an autism diagnosis instead as it's more widely accepted and better understood.

I do BUT the MH team are adamant I am not. I actually did an online course today on PD and complex trauma. I still felt it was a misdiagnosis for me but others said they have no relationship issues either and apparently a trauma profile is not necessary either so who knows? 🤷🏼‍♀️

Clearly a mystery.

So more than an hour as you stated then.

All the private ones round here are £3k and detailed. Nobody spends £3k on a diagnosis unless they are pretty sure and have evidence.

Ok. I’m sorry if my comment came across as insensitive. I shared an opinion that wasn’t asked for and didn’t take into account that some people in this discussion may have found real improvement or relief through their adult diagnosis. I don’t know what internalised ableism is but will look this up.

Thanks for sharing, and I apologise if I came across as insensitive, I realise I offered an unsolicited opinion.

I’m curious to hear your thoughts on being categorised under the same disability as those who may be unable to work or live independently. I understand it’s all part of the same disability spectrum, but would you still feel that same sense of relief, forgiveness, and self-understanding from a diagnosis if it were called something other than autism?
Or do you feel that the greater information and acceptance surrounding autism specifically has made a difference?

I can totally relate about having to pretend to be the same as everyone else. For me, though, it feels more like the world itself has changed, and those who are often seen as ‘different’ or ‘diverse’ might actually just be evolving in step with how the world is progressing.

My thoughts on that are...I also happen to have a form of arthritis. It's not one of the common ones, and I know it's going to get worse as I age, but it's likely that I won't end up in a wheelchair - unlike a lot of people with that same condition.

I don't feel any kind of way about the fact that I have the same condition as those people who can't walk and spend all of their time in a wheelchair. It's still the same condition; the underlying cause is exactly the same, even though the presentation is different. I mean, I'm told I should feel lucky, but it doesn't feel particularly lucky that most days I need help getting out of bed, and some (rare) days I can't get out of bed at all.

That's what gets lost in these "My child's autism is much more severe than yours" (or, often, "My child has real autism, yours isn't") arguments. The underlying cause is the exact same, medically-speaking, meaning that any research into understanding it more will also be the exact same. Not only that, but calling it something else and treating is as something different will actually do everyone a disservice; it would mean, for example, that the population of people available to act as research subjects for autism would be vastly reduced. That's just daft.

There's also, as I said, the fact that it's a variable condition. To use the DSM's definition of levels, until my 40s I would've been seen as a level 1 all the time, even though I had sporadic periods where I would've fallen under level 2. Throughout my 40s, those level 2 periods have been getting much more frequent, probably up to 25% of the time.

I know people who've been deemed level 2 at diagnosis, but they also have times where they look more like level 3. Again, increasing frequency with age.

It works the other way, too. Children who've been diagnosed level 3, unable to communicate or manage their lives, then suddenly around 7-11yrs old they start talking in whole sentences and by mid-teens they're operating in the level 1-2 range, sometimes even able to hold down a job (with support) as they transition to adulthood.

So, if these are entirely different conditions, how would you explain moving back and forth between them? Some days you have one permanent, incurable developmental condition, but then on other days it's disappeared to be replaced by a totally different permanent, incurable developmental condition. Personally, I've never heard of such a thing; pretty sure it'd be a medical first.

@surelycantjustbeme - apologies, I've just re-read that and realised I didn't properly answer the questions you asked.

No, I probably wouldn't feel the same kind of relief, because to describe them as separate conditions would be a false distinction made for social reasons rather than medical/psychological reasons, and that would just cause further problems as - like I said - the variability of the condition would make dealing with medical services much more confusing and difficult than it is already.

Say, for example, that we were using the old definitions - "Aspergers" for level 1 and "autism" for levels 2 and 3. I would've been diagnosed with Aspergers...OK, fine. However, one of my major sensory issues is to do with my teeth; I've just had a dental treatment plan drawn up in which I have to have a couple of fillings. Anything like hygiene treatments, or drills, increases the risk of me having a meltdown to an almost certainty, in which I lose all physical and mental control.

Now, meltdowns to that degree in adults aren't part of the Aspergers condition. How am I supposed to explain to the dentist, and my GP, that yes...I have Aspergers, but if anyone puts power tools near my face then it turns into autism? "That's not possible", comes the answer, "because they're different conditions". The result? I don't get the right sedatives, and I wig out in the chair when someone's got a power tool in my mouth.

However, since I have an autism diagnosis, all I needed to do was go to my GP and explain the problem, and I got the exact right treatment with no further questions asked.

This is the kind of thing that never seems to get a mention, usually because autistic voices aren't the loudest. Without this, though, we often just avoid things like health and dental services because we can't make ourselves heard and it feels like too much of a risk.

"Or do you feel that the greater information and acceptance surrounding autism specifically has made a difference?"

Yes, it's made a massive difference - I've seen it change even in just the few years since my diagnosis. These days, I have to explain much less. I've changed jobs a couple of times since then, and accommodations at work are much easier to come by now than they were even five years ago too.

Outside of that, folk seem to treat me much less like a live snake when I tell them (which I only do if it seems necessary, or if I think I'm going to make them uncomfortable without that common knowledge). I don't get as many strange looks when I'm wearing shades in bright shops, or wearing my earbuds in environments most people wouldn't consider noisy. Haven't been pointed at or called a weirdo/freak in three or four years now.

Also, apologies for the verbosity. Brevity, as I'm sure you're aware, isn't often an autistic talent ;)

@ntmdino

Thank you for sharing, it helps with understanding different perspectives.

I think where I struggle with the arthritis comparison is that arthritis is a medically diagnosable condition, assessed and managed according to clear physical symptoms.

My concern, though, in this case is that it can feel more subjective, as if the person might be seeking a label for traits that can be interpreted differently depending on personal perspective or experience. Just based on the patterns I’ve observed and how the label is used. Thats not directed at you though, :) just the person i’m discussing.

And It’s more about my uncertainty with such a broad spectrum that includes both people who clearly benefit from support and understanding like you, and those who might self-identify more loosely.

I think, as I’ve been told to get an assessment before as my traits match those possibly on the spectrum, add to my curiosity (and frustrations). It makes me wonder how many people have been convinced that their unique qualities or different traits, or social anxiety, or sensitivities, mean they belong to a label (but it’s on a spectrum so we can’t oppose it as, how can we possibly pinpoint our perspective or know where someone sits on the spectrum. I feel like with some, that very much depends on the narrative that fits their needs). And in my case I feel like the person wouldn’t listen to assessing for anything other than autism, even if information is shared about personality disorders. Very much set on autism.

I think I need to learn more about the assessment and diagnosis process before I can contribute meaningfully to the discussion though so please don’t read my comments as anything other than trying to gain better understanding (while probably oversharing my opinion). And thank you for your insight.

Autism is also a medically-diagnosable condition, assessed and managed according to clear symptoms. The difference, which I think you're alluding to, is that the variant of spinal arthritis can be seen on scans; however, the effects of it can't - that's entirely personal experience which needs explaining to a doctor who can't see or feel it.

For what it's worth, it took me two years and three misdiagnoses (along with completely inappropriate courses of treatment which actually made things worse) to finally get a doctor to understand/believe enough to finally bestow upon me an MRI referral, at which point the correct diagnosis was obvious. My particular experience is actually amazingly close to the experience most folk have trying to get an autism referral and diagnosis!

The interesting, and difficult, part when talking about self-diagnosis is that almost every single person diagnosed as an adult self-identified first. That's how we tend to learn about the condition; joining online groups for autistic people to talk to other actually-autistic folk, to compare and contrast etc. It's often said that every late-diagnosed autistic's first special interest is autism itself (specifically theirs, but also the people they managed to talk to).

Were it possible to get a timely assessment in this country, this situation might be different because there would be no need to self-diagnose. However, when referral waiting lists are anywhere between 3 and 15 years depending on the postcode lottery, and private assessments are £2k+, we are where we are.

That's one of the main reasons I don't judge those who self-diagnose. Many (perhaps even most) will seek a formal assessment at some point; not all, certainly, but the overall effect of this in recent years has been to increase the level of awareness and knowledge in society, which in turn has made my life easier (I can't speak for everybody else, obviously, but many autistic folk I talk to have said the same). Ultimately, it's a positive trajectory, and that doesn't seem to me to be a bad thing.

In terms of the individual you're talking about, though...you might want to ask yourself why it matters to you so much? I mean, consider what you said here - "And in my case I feel like the person wouldn’t listen to assessing for anything other than autism, even if information is shared about personality disorders". So...they'll go through the assessment process, and they'll get a definitive answer. There's nothing for you to do in that journey; please don't take this the wrong way, but dispassionately-speaking it's not for you to try to influence it either (by which I mean...you clearly haven't managed to influence them so far, and like most of us you don't have any qualifications or experience sufficient to change their mind). Ergo...the logical course of action is to save yourself the brain time and just sit back and wait. You might be surprised by the result, you might not, but either way you'll have more information by the end of it. And, for you, it'll be free of charge or effort :)

Thanks for not taking any of this personally, by the way. I can be a bit blunt when talking about this, or so I've been told ;)

Up to a 15-year referral list.. wow!

I understand your perspective, but it sounds like you believe everyone who self-diagnoses is being genuine. I don’t see it that way.

From what I know of their situation, I think they’d gain more by exploring other underlying issues that might be contributing to their challenges and focusing on getting support for those. If there’s a possible personality disorder they could receive help with, that feels like a more constructive place to start.

I know I can be quite black and white in my views on this too, but surely you don’t believe that everyone sitting on a 15-year waiting list with a self-diagnosed case of autism is being completely honest, just because you are. Maybe I’m just more cynical about people, or maybe you haven’t encountered as many manipulative humans as I have.

And, likewise about not taking it personally :)

I do believe that almost everybody on a 15 year waiting list is on that list in good faith, yes. Why on earth would anybody do that if they know they're not autistic? There's absolutely nothing to be gained - there's certainly no social cachet to it. It's not like people wake up one day and say, "I know, I'm going to stick myself on the waiting list for an autism assessment so I can tell everyone about it" - getting to that point is usually a years-long process of convincing ourselves to finally go for it, then having to fight for referrals with GPs whose knowledge of the subject stopped growing around the time Rain Man was released.

There is, however, the opposite case to be considered. By casting doubt on everybody who's self-diagnosed and is on the journey (remember, almost every late-diagnosed adult started off that way), you're actively harming people who are autistic and will benefit from a diagnosis. We all had to deal with an incredibly difficult personal journey which forces us to re-evaluate our entire lives and get through all of the self-doubt and impostor syndrome, finally get ourselves set on it, then go through the nerve-shredding process of applying for a diagnosis, all the while having people come along with "Oh, you're not autistic, you're just a bit odd sometimes". Now imagine that with "Oh, you're not autistic, more likely that you've got a personality disorder" - imagine what that does to the person. I know a few people who were so discouraged by people saying similar things to them that they ended up being assessed 15-20 years later than they should have, and suffering in silence all that time.

Another thing to consider is that the false-positive rate is incredibly low, whereas the misdiagnosis rate (especially for women and girls) is incredibly high - of the autistic women I know, roughly half were misdiagnosed with bipolar disorder and wrongly medicated for years/decades before finally getting an accurate diagnosis.

On balance, it strikes me that there's far less harm caused by leaving people alone than declaring that they've all probably got a personality disorder in the hope of catching a couple of fakers. Especially when, being gentle about it, most of them have probably already researched everything to a much greater degree than you have just to get to that point in the first place.

As a starting point, you might want to look at the DSM and ICD definitions of autism. Both of them explicitly say that an autism diagnosis can only be made if any of the symptoms can be explained by any other condition. That's the first thing that all assessors will consider.

Accommodations in school or university? At work? These may not absolutely require a diagnosis but it can help, especially with work.

OK. I really can’t articulate my point here without sounding awful, so I think I’ll stop replying now :)

Obviously, I don’t think everyone on the list is faking it. But it does highlight why it’s so damaging that everyone can sit on such a huge spectrum. I think it’s damaging that everyone who self identifies is blindly believed until the point of diagnosis and purely because I don’t believe there should be a such a huge spectrum. I think it does need to be split.

Going back to my original point, as I’ve gone way too off piste, the person I’m discussing clearly has other unaddressed issues. I sense she’s avoiding the hard realisation that those other issues are there. I sense she finds it easier to gun for an autism diagnosis because of the perception that you can be slightly on the spectrum and still land a diagnosis based on your quirks and traits ticking the list.

I do suspect she’d gain from lying to get on the waiting list for a diagnosis. She doesn’t want to work, and I sense she’ll benefit from sitting on the lower end of the scale, wearing it like a badge to receive extra special treatment, instead of addressing what may be a less accepted personality disorder.

If anyone reading this sees me as insensitive, I’m truly sorry. It’s just how I feel. I don’t have any suggestions for solving the problem, and I don’t invalidate anyone who feels an adult diagnosis would improve their life and sense of belonging in this world.

If it's any reassurance, DD1 is considered 'complex'. She has a known, physical, brain malformation that was identified at age 3. She has a learning disability that is less clearly defined (functional ability lags badly behind intellectual ability). She was under the care of a paediatrian with a special interest in ASD and neurodevelopmental conditions from age 3 to 18. It took until she was 15 years old for him to decide that she should be referred for ASD assessment. She's now 20 and is considered highly autistic. The reason it took so long is that she wasn't developmentally mature enough to separate out the root of the behaviours. Once she was 15, she had developed an eating disorder and was mentally unwell, and it was decided that her LD alone couldn't account for her presentation. She has had clear ADHD traits since she was a baby but, again, with the LD and developmental delay, it wasn't clear if she was just more 'child like' than her age would warrant, so she is only just going through assessment now. She has also, now, been assessed as having a mood disorder, which is separate to the rest. As I say, 'complex' but it's an example of the caution with which ASD is diagnosed.

DD3 was very poorly and out of school. She was diagnosed and treated for OCD before she was assessed for ASD. The ASD team diagnosed her and wrote in their report that they could see signs of ADHD and recommended assessment. It was once the OCD was under control and the ADHD was medicated that she started to be able to engage with her new special school.

DD2 is very autistic, if you can be such a thing. She had 3 different schools before anyone listened that she should be assessed for ASD. She was 9 when she was referred and as soon as we got to CAMHS, the CAMHS worker said that she was, in his view, clearly autistic and although he was meant to have 3 appointments discussing pathways, options, screeners, etc., he was just going to skip to the screener and get her on the waiting list. She was diagnosed when she was 11. She went to special school at 15.

Ah and now we get down to the reality of why you started this thread.

Dont be ridiculous. The bar is high for a diagnosis and ND is under diagnosed in this country. People who self diagnose aren’t believed blindly and literally nobody cares when you have a diagnosis for autism, adhd or BPD anyway.You get zilch. Anything you get as regards any kind of support is needs based not diagnosis based ( bar adhd meds)and the bar is incredibly high for that too.

You can’t split a spectrum, that is what would be massively damaging and impossible hence it not happening any time soon.

You sound quite unpleasant and unpleasant to boot. My children all use headphones intermittently depending on how full their bucket is which impacts sensory overload and differing situation ditto the many autistic children I’ve worked with over the years. Who made you the head phone police?

Oh my, I’m so sorry to hear what an awful journey this has been for you, your family, and your children. I can only imagine how frustrating and exhausting it must be. Sadly, I know you’re not alone as I have friends with 2 children in a similar position, so many others have to go through the same gruelling process just to find answers and, even more importantly, the right support.

Please know that my comments about adults self-diagnosing to be labelled as on the spectrum, for the wrong reasons such as avoiding addressing other issues, were absolutely not directed at you.

And i’m sorry for your children, who are genuinely autistic. I’m sorry you have to fight against people like me who do have views about non-autistic people who sit on the same spectrum as your children, when they should instead be helped to address other issues.

You are absolutely not qualified to comment on or discredit the ND of others of whom you know very little about. Do you do this with other disabilities?

You have zero proof for your bat shit obsessive hypothesises

EUPD/ BPD is not diagnosed until 18 for good reason. It is autism that is missed not the other way round.CAMHS do not refuse to help children with an autism diagnosis.

They are being honest! Why on earth would people sit on a 15 NHS waiting list that carries scrutiny, stigma and little gain ( bar additional knowledge)in pretty much all sectors? Why would anybody spend £3k for a private diagnosis without plenty of evidence to get you through screening let alone diagnosis? There is no benefit with a diagnosis bar information which can be helpful in dire times like sectioning, hospital treatment and the legal system.

I agree. I know I’m not but it sounds like a lot of people commenting on here are a lot better placed than I am, and I’m learning a lot from this thread from both sides.

I know my views come across as harsh, too black & white, and I know I don’t have the right to try and third party diagnose anyone. But in my situation I do sense that someone is avoiding addressing other issues. I’m entitled to share that, even though you may trust that every single person is truthful. Good for you that it doesn’t upset you that there may be people who are wrongly categorised the same as your children. Who gain financially from that. From the tax payer. From rationed resources that are already stretched.

This is indescribably naive. These evaluations are extremely subjective and psychiatrists disagree frequently. My daughter was diagnosed with ASD. Then told this was a misdiagnosis by another psych and was diagnosed with adhd. She is now an adult and has been told that this was a misdiagnosis and has recently been diagnosed with anxiety disorder.

There are huge benefits in obtaining a diagnosis. My dd didn’t get extra help in school until she had a diagnosis- and then she got lots of help. I also got some financial benefits as well as extra help that gave me some respite during the summer holidays