Sister self-identifying as ASD is now identifying rest of family as ASD

[Kipsmum]

That's it, really. Two years ago my DS, in her late 50s, was divorced by my DBIL after 28 years of marriage. She's always been prickly and as she's aged I and my DB and DBIL have had to tiptoe around her more and more delicately. During the divorce process she went to a counsellor and since then has communicated with us in 'therapy speak'. Everything is about her, her feelings and her speaking her truth. My DB and I listened and nodded and tried to support her and we hoped she'd emerge the other side of therapy happier and easier to get along with.

Now she's sent us several massive WA messages to explain that she's done an online questionnaire and has diagnosed herself as ASD. She's started saying that both our parents were ASD and she also says my brother is ASD. She cites things like the fact that my parents were quiet people who only had a small social circle, as proof. She's said my dad had no friends and I gently reminded her that he belong to the bowling club and also the local cricket club and had friends from his allotment: they all came to his funeral. She's said the same of my mum and I've pointed out that Mum had a number of friends she was regularly in touch with and until she died had several holidays a year with those friends or her sister or other relatives. She also volunteered in a charity shop and did day one evening classes and made friends there. My sister is furious when I point these inconvenient facts out.

My DB is a quiet, family-orientated man like my father and DS says this is proof he's ASD, but DB's certainly not a black-and-white thinker and has no issues with communication and social skills, let alone the more obvious indications of ASD. DS has been angry with him because he's told her he thinks she's got this wrong.

We have no idea what to do or what to say. Unless we just nod and agree with her, DS gets very angry with us. If anyone has any idea of what's going on, please shine a light.

There seems to be an obsession with diagnoses these days. Everyone wants a label. I suppose it’s better than the stigma that used to exist, but lately a diagnosis of ADHD/ASD/anxiety is almost worn like a badge of honour.

OP your sister is going through the “born again” phase, I’m sure she’ll come out of it. I’d just humour her, say she may be right about your family, she may be wrong - but everyone is functioning just fine, and getting a diagnosis won’t serve any purpose for you.

Yeah there are a lot of people like your sister on here. They talk about how hard it is to get diagnosed and how thorough the assessments are, but also feel comfortable declaring a poster or somebody a poster describes is autistic.

So like a MLM. You self diagnose and then it’s your job to diagnose 7 more people so that they may continue the scheme.

Just ignore. Say “oh really” and change the subject. There will be something else soon. You can tell her to change the subject it’s a bit overdone now.

She's rude. & You're enabling her. Personally I wouldnt put up with someone who has a 1 tracke me me me conversation. I'd show her the door every time. Rudeness and being that self-absorbed is unwelcome.

It's also very unfair to your husband, having to put up with your family member spouting off like this. I mean it's up to you if you want to put up with this nonsense for years on end instead of shutting it down tho.

Even if you are ASD so what? & you don't need armchair psychologists going on and on about it. You'll get a good few in here though who imagine themselves as uber-clever despite not being qualified to diagnose.

I would say

We realise that coming to terms with your own neurodivergence must have been a shock but also perhaps a comfort in some ways. However, please don't label others in the family and please let people work towards an understanding of themselves in their own way and in their own time.

Just a thought @Kipsmum , is she a drinker?

There have been some diagnoses of ASD in my family recently (children) and there has been discussion in the family about who else might be. It's not armchair diagnosing per se, but it's more exploring how things were in our family. No one is stressing out about it at all. One family member says that they probably are, but don't feel the need to pursue as they have learned coping mechanisms.
If someone says you might be autistic, it's not a diagnosis obviously, coming from an unqualified person, but a bit of sense making.
I think say, gosh sister I don't know, I've been reading about it to support you and I don't relate to the signs. However I support you on your journey to learn more about yourself. Me and brother are going to inform ourselves about it so as to support you.

I am interested in your part about your friend. I sort of self diagnosed before my actual ADHD diagnosis because I started researching it and it's absolutely 🤯 when you realise you have something that explains your entire life. Like omg I'm not just a freak. (Not calling anyone else a freak, it's how I always felt about me and my nuances, always slightly alien to other people)

I probably did monologue about it for a while to my nearest and dearest but it's such a huge thing to go through to realise you are actually ND. At first I was relieved then I had a grief bubble that lasted nearly a year.

You see the ND in us can often spot other ND people as we tend to run in packs. Your friend maybe right but if you're not interested in seeking a diagnosis, tell her to stop mentioning it about you to you. I would also encourage her to go get assessed so if she does have it, she can get proper help. I mean she could also be wrong about herself and you! She's not psychic or a psychologist of course.

I know self diagnosis can appear annoying to others but it is part of the journey to finding if you are. If we didn't suspect something in the first place, none of us NT or not, would ever go to the doctors at all would we?

@MsCrawford
Your dh isn't on a list to be 'diagnosed', your dh is on a list to be 'assessed'. I work in an ASD assessment team, not everyone gets a diagnosis.

Oh come on, you're nit picking there. I think they realise that, it was just a choice of words.

Wow. Never has a post resonated so much with me!

I don’t have ASD, but this post puts into words everything I find confusing about friendships. Thank you. I’m keeping a copy if it.

Ultimately though what does it matter whether you agree or disagree that she (and various other family members) have autism? For each individual either they have or they haven't and getting a formal diagnosis will neither change that or make their life any easier.

Your OP spent an inordinate amount of time explaining the arguments you've had about whether or not people have or had (where deceased) friends which shows quite a lack of understanding of ASD. Autustic people very much do have friends. It's not at all unusual for an autistic person's friendships to be based around particular organised activities (bowling club, cricket, allotment, church and charity) because that structure helps to give a framework to the social interaction. But obviously that doesn't mean everyone who participates in these things has autism.

You don't need to argue with her. Just shift the focus. Asking questions like "so how is this going to inspire you to change how you deal with the world?" helps to shift that focus. Having autism isn't a carte blanche to allow a family member to demand everyone changes to suit them, so if her obsession with this is resulting in unreasonable demands you can gently remind her that everyone else's diverse needs are also important.

^ this

Not diagnosed but highly suspect it and this is totally my experience. I touched on it briefly in a discussion with my sister a year or so ago and instantly got dismissed so I won't go there again. Pointless discussing it with my useless brother. My good friend who's brother is autistic and knows me much better can see it too.

I have had a lot of ups and downs over the years of which my sister knows nothing about because I am very private. I thought it was down to bad luck. I've come to the realisation that a lot of my troubles are down to how I interact with the world. I actually fared better when I was younger because I was quiet, more compliant and masked to fit in but it was exhausting. Since I hit middle age it's all gone completely to pot.

It's difficult. The sister you see through you sibling lens is probably not the sister you think she is. You don't have to dedicate hours on end to her droning on but you can empathise with how she is feeling and encourage her to seek professional support and a diagnosis. All this talking about it is probably because she's felt shit for years and a lightbulb has gone off in her head.

@MsCrawford

You missed my point

I don’t think this is against anyone with ASD, but I think the majority of people would be upset if someone kept telling them they had XYZ when they don’t think they do, because it suggests that the person telling you you have XYZ knows you better than you know yourself. I’d be upset if my family kept telling me I was on the spectrum when I don’t think I am particularly, because A) it’s rude to insist someone is something they’re not and B) it takes away from people who have got ASD and need extra support

Personally I have no issue with self-diagnosis. Or talking about it. Only using it as an excuse for bad behaviour. And I don't just mean just self-diagnosis, all 'ignoring process'.

I have ADHD (and an autistic husband). And I'm in a department with a lot of ND people. There's a growing minority that use it as an excuse to get away with murder. However they refuse to go through the proper process of being referred to occupational health.

Instead, they ask their LM for accomodations which can be unreasonable (like wanting to record conversations but refusing to inform their colleagues that they're being recorded). Not turning up to meetings on time, not logging in for half a day.

HR won't let us performance manage them because they claim they're ND and HR is scared of being sued. But equally, HR won't force them to go through the proper process either (by the way, our company health insurance covers diagnosis so in our case there's nothing standing in the way of them being properly diagnosed if they aren't already).

There's no winning as a manager. I don't think people should be able to just say anything they like and expect to get away with it. No process, you're treated as not having it.

Also because there's such variation in ND symptoms for any given manifestation people can claim literally anything, nobody has any comeback.

I think we have the same sister. Mine has self diagnosed both herself and her husband and suggested that all our family ‘are on the spectrum’. It infuriates me

I'm Autistic. Diagnosed at 35 5 years ago.

I can understand people being offended if they don't think they are.

It's like me being in a mood for a valid reason and someone saying I'm bipolar or something,

I don't see why people wouldn't want an assessment though if they think they are.
I assume some of these people probably know they aren't.

If she’s sending you WA messages about it surely you don’t need to respond? Just read it and leave it. I don’t see the value in engaging with every text she sends. Maybe the read but not responded feedback will give her the message that you’re not going to respond every time.

To what end is this for anywhere? What point is she trying to make?

For anyone in therapy (and for most of us generally) labels are so seductive. They hold out the illusion that a single framework or gestalt will make everything fall into place and provide real solutions. Sometimes that is true. But more often, 'diagnoses' are among the least central parts of therapy.

I suspect that for the OP's sister, the project of labelling has derailed her encounter with therapy. After all, even if her self-diagnosis is correct, there is little reason to suppose that meeting the diagnostic criteria for ASD (as so very many people do) has been the key explanatory factor in shaping her personality and her life experiences.

For many people who are just on the fringes of diagnosability, their ASD is just one feature among many that creates who they are. The contemporary trend of throwing it to the forefront of one's self-definition is hugely regressive, requiring us to define people in terms of a disorder that they happen to have. It is absurd that, almost by definition, it is assumed to trump so many other parts of a person's neurology and life experience.

I can remember when the term autism was reserved for severely disabled people, incapable of living independently. Now the term has to do double service: it still refers to these severely disabled people but it is also used simply to name a neurologically influenced set of personality traits that used to be called Asperger's syndrome.

The immense additional needs of the severely disabled people with autism have therefore been accidentally co-opted to create a picture in which normal, healthy people who happen to be outliers in respect of a particular set of neurologically influenced characteristics (and are therefore present on a broadly defined autistic spectrum) feel driven to pathologise their own personalities and expect others to view them in the light of pathology.

I wish we still had two different terms - one for people disabled by autism and one for people who are simply different in virtue of what are currently called autistic traits. There is no single underlying physical explanation for all clusters of traits on what is currently called the autistic spectrum, so the rationale (if any) for naming them all as one phenomenon has to be stated in terms of the utility, for individuals, of doing this. At the moment it seems to be as productive of harms as it is of benefits.

Also being neurodiverse is a disability...not just a 'different way of thinking' as people sugarcoat it. There's no disability that has 'only' a social communication aspect (so you claim the problems isn't you it's NT behaviour).

Not sure what people s attitude has got to do with my executive dysfunction meaning it takes me 3 hours to cook a simple meal because I keep getting distracted...

@Kipsmum

Thank you: interesting perspective on the situation. I can see how infuriating it could be. I've gently suggested that DS gets properly diagnosed and been told there's no need, it's clear as day to her and she hasn't got £1000s to spend on a private diagnosis and can't wait years for an NHS one.

Why can't she wait years for an NHS assessment? Presumably, she's not terminally ill and she'll still be around in a couple of years.

I'm autistic, diagnosed in my 50's, and I relate to @Wimberry posts on this thread.

I think the original comment was a joke - whether you picked up on the humour might point to a diagnosis in itself(!)

It's offensive to diagnose anyone else with any condition, no matter what it is, if you aren't a medical professional with that person as your patient.

One of my friends was diagnosed with ADHD and then immediately went round diagnosing half her friends with it, including me (I am the very opposite - I hate being late and concentrate on whatever I'm doing until 30 mins before an appointment which is when I need to leave, you can name any object or piece of paperwork and I will tell you exactly where in my house it's located because everything is organised, I finish every project I start before moving on to the next one, I don't have trouble paying attention in conversations, will happily do things for hours but not obsessively etc, not a chaotic person, not a physically jittery or clumsy person - she knows all this).

It was almost excitement that she had got herself assessed and wanted to share it with everyone, literally.

It caused a weird outbreak in some of our friendship group, one person went to 5 different doctors until he found someone who agreed to diagnose him with it.

It's a tricky one but I think OP has to keep encouraging a professional assessment, even if she doesn't get seen for ages at least she's on the list. You need a qualified third party to tiebreak it, and also to keep saying that even IF brother has it, he may not want to do anything with that information.

Exactly. I wouldn’t be particularly offended initially if somebody thought I was autistic, but if it turned out that they were basing that on them deciding that my friends don’t count as real friends or my interests being “weird” in their eyes, I’d quickly lose patience. If they then kept insisting that they were right and I was wrong every time I saw them, I’d be pretty pissed off. I think most people would honestly.

It can be quite difficult to get anyone to agree to put you on the waiting list. We have a ds, now 26 that is disabled with autism and diagnosed at 13 in the nhs.

We also have another ds that received years and years of nhs treatment for dyspraxia and was offered an autistic assessment at aged 14 which he turned down.

Despite that family history, when our dd took an overdose aged 16, and despite me querying autistic burnout and the family history, neither her school nor CAMHS would support even a referral onto the waiting list.

Ended up paying 2k to get a private assessment. Obvs, the experts noticed the efforts she puts into appearing 'normal' very quickly. Definitely was an autistic burnout that triggered the overdose.

When you present at an unsympathetic GP asking to go on the NHS wait list, you could well get a refusal and offered treatment for your symptoms - councelling, anti depressants and such.

Not easy.