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.

I was diagnosed with ASD and dyspraxia when I was over 60. I hadn't realised I had ASD until I read a Mumsnet thread. It taught me that my main symptom is executive dysfunction.

I've always been dreadfully untidy. It's been a lifelong problem and I've felt so useless.

I took pix of my bedroom and kitchen, showed them to my GP, and was being assessed inside a month.

I've always been "weird", but it hasn't really bothered me. I don't spend much time worrying what others think of me.

With regard to OP's sister, since my diagnosis it's become an accepted thing in our family that several of of us have ASD traits. We've found it helpful

Yes on the waiting list for an assessment.

So do you! Comparing autism to cancer is offensive in so many ways, and it’s just not the same thing.

It’s more as though sexuality had to be diagnosed. You know your sexuality because you know, not because it’s been pathologised, assessed and officially confirmed.

Autism isn’t an illness, it’s who you are, essentially.

@WaitingForMojo I wasn't in any way comparing autism with an illness I was just illustrating the silliness of diagnosis based on online questionnaires. Maybe it was badly phrased.

Mine didn’t suddenly make sense, it was more of a gradual process. My adhd diagnosis was more of an epiphany.

But with my autism diagnosis I went from thinking perhaps I had traits but wasn’t sure if I’d get the official diagnosis, through thinking it wouldn’t matter either way if I did, to being diagnosed very clearly and being told it was a very clear cut diagnosis… i didn’t tell many people at first and struggled with it. Now, I feel so positively about it but that’s seven years later, after so much learning about what autism actually is, and understanding myself and how I fit in the world. Now, it’s nothing short of transformative, and it’s given me my confidence and self knowledge, as well as pride in who I am.

But it wasn’t always that way and I was pretty gutted at first.

Ah ok, sorry if I jumped down your throat. They are standardised testing tools that professionals use to inform diagnosis though.

@Dontlletmedownbruce a difference with cancer and autism is that my GP asks about my health with things like cancer in mind, I have screenings for various cancers, I would be referred if there were any signs.

There is no such thing for autism, not for adults anyway. And before anyone starts with the 'it's because you're fine and it's nothing like my seriously disabled brother/cousin/neighbour.... Yes my autism allows me to live independently. But it nearly didn't, for the time I had a mental health breakdown and was suicidal. Or the time that I lost the ability to speak. Or was misdiagnosed with anxiety and given drugs with severe side effects. It may mean that I can pay a bill, and hold down a job, but it doesn't mean that it's not disabling. Autistic burnout is a real thing, and if I hadn't researched it myself (initially doing so on behalf of others in my job role) I wouldn't have had an inkling to seek an assessment. And as I've shared earlier in the thread, there was ZERO option of an assessment in my local trust at the time - waiting lists were closed, end of.

@WaitingForMojo believe me I know about it. I've two kids diagnosed and work with kids, some also diagnosed.

I have a good friend who since her late ( but at least professional) diagnosis has gone on to diagnose most of her friends, my family and her work colleagues. She suggested my daughter " might be" because even as a teenager she's likes a tidy room. It's extremely frustrating because her diagnosis hasn't actually improved her life at all so I'm not sure why she's so keen to label everyone else

Yesterday she messaged me to say that I could never understand what she'd been through and couldn't possibly empathise with her. True, obviously. She went on to say that all she wanted from me was emotional support but I'm not capable of that, all I offer is fake empathy. It doesn't feel fake to me: she's my sister, I love her, I can see she's struggling, I try my best to understand. I wasn't sure what to say in response, so I asked for 24 hours to reflect. Earlier this morning she messaged me saying she needs someone truly empathetic in the family to help her explore our family dynamics honestly and openly and I'm the only one — and also that I'm shit at it because of my adherence to my own view of our family...

At this point it sounds like she's being a rather self-obsessed and demanding person, whatever the reason. Neither she nor anyone else has the right to dictate to you and try to force you to adopt her POV the way she is doing.

I don't think i missed it. But it doesn't invalidate my comment does it?

I am in Scotland. I didn't realise in England you can self refer. I hadn't seen comments about that when i wrote my post.

In Scotland, if no professional will agree to add your name to a waiting list, you just cannot ever get an NHS assessment. It ends right there.

And, atm because they are absolutely snowed under, they just cannot meet the waiting list targets at all so more people (like my dd) are getting refusals.

So - for England - yes my comment was invalid. But not because of anything you said - i saw another poster mentioned something about a right to self refer. Which we don't have here in Scotland.

Agree with all this. I have one ds disabled with autism but he is a very happy chappy who gets full support services and has had help from the age of 2yrs. He has a cognitive difficulty too.

But my eldest ds walked out in front of a lorry at 14yrs.

And my youngest dd took an overdose aged 16yrs.

Fortunately, both survived (dd was more a cry for help)

And both much happier out of the school system.

Ds now late 20s, FT employment, partner and child and he will be ok as long as he keeps demands manageable.

Dd the same. She is 17 now and out of school in college on a practical course 2½ days/week. So much happier.

Both of them burned out. Both cognitively able. So, although my ds that's disabled will never live independently, he has far fewer demands on him and his life is actually very enjoyable to him due to the support.

Cognitively able autistic teens and adults often aren't recognised or getting the support they need which can cause them to reach a point of crisis. Life can actually be harder for them in many ways as they take on their own worries.

Less able autistic adults like my son have their lives managed for them.

@Anisty I live in England. The waiting lists were closed when I tried to seek an assessment. Even since then I know of people who have rung or emailed to self refer they get an automated message to say that there are service pressures due to staffing issues. The calls or emails aren't responded to. So while there is in theory a route for adult assessment, in practice there isn't, where I live.
I get really frustrated by the people who keep posting that it's just about waiting and being determined, because that isn't reality for everyone. The insinuation is that people who don't have an assessment are avoiding it because they are falsely claiming to be autistic is pretty unpleasant. In addition to difficulties of getting assessed there are other valid reasons people might not pursue an assessment, but still be very sure that they are autistic. Having children diagnosed, realising you're very similar, and not feeling the need to have a diagnosis yourself is very common.

I'm glad all of your children are doing well now. I know there's much more of a platform/voice for some with autism compared to others (especially those with severe learning needs) and I think that needs to be balanced, but it doesn't mean that anyone's experience is less valid than another person's.

Thanks for that @Wimberry . That's what I posted much earlier in this thread and then @Clarice99 came back with her response.

I knew that in Scotland you just cannot get onto the list at all and sit on it for years as Clarice suggested. But i thought i was in the wrong after reading other posts.

We had to go down the private route for dd. Even with our strong family history and her overdose, all Camhs were offering was anti depressants.

I'm not against anti depressants but she was 16 and at no point had she been officially diagnosed with depression! She had not seen any doctor or psychiatrist.

It was a camhs nurse only who didn't even meet her in person. Just a zoom call. When i asked for her to be assessed for autism, a discharge from Camhs letter arrived through the post!!

Shocking service. We were left in limbo with a struggling dd. Fortunately, once she left school she was happier straight away.

We paid 2k for her to be privately assessed and it has answered all the questions she could not as to why she took an overdose.

It has settled me down knowing what was going on in her mind at that time.

Autism UK writes about this aspect. It’s not so cut & dry:

Barriers to being referred for a diagnosis

Many people delay contacting their GP to raise the possibility of autism; some of the reasons they give include:

• fear of being dismissed or not believed by the GP
• noticing signs but being unsure of what they mean
• concerns about not receiving an autism diagnosis after an assessment
• general anxiety about making and attending appointments
• feelings unable to communicate the signs they notice in themselves or their child
• fear of judgement from others if they receive a diagnosis
• the complexity of the healthcare system
• being uncertain of the value of having a formal diagnosis
• mistrust of health care professionals
• the cost of travelling to the appointment
• the cost if they decide they have to get a private assessment.

Some people seeking a referral for an autism diagnosis from a GP or medical professional have positive experiences and describe their GP as being ‘kind’ or ‘sympathetic’. However, for others, the experience may not be so positive and they may struggle to get a referral.

Autistic people and families who had a negative experience have said they believe this was due to:

• a lack of autism awareness among professionals, including relying on stereotypes and demonstrating a lack of awareness about the diversity of the autism spectrum
• prejudice from professionals, for example due to the persons’ ethnicity, immigration status or past support from services such as social work
• too much focus on behaviour and not the reasons behind that behaviour
• focus is placed on parenting style rather than signs that the person may be autistic.

It is common for autistic adults to have accessed mental health support before their diagnosis, often not realising they may be autistic. Some find that the therapy or medication they are given didn’t improve their situation and so they considered other reasons for the difficulties they were having, which led to them questioning whether they may be autistic.

Some autistic people mask (hide or suppress) their autistic characteristics, consciously or unconsciously, in order to blend in and be more accepted in society. Masking can make it harder for them to realise they may be autistic and for health care professionals to identify them as autistic.

Some parents have reported that the diagnostic process can feel like a 'fight' because doctors, teachers or other professionals didn't recognise their child was autistic, instead suggesting they were 'misbehaving’ or that the parents needed support themselves. Others reported being referred for parenting classes implying they were responsible for the differences in their child’s behaviour compared to other children.

Wow that's interesting and not good for people who actually have it.

When I had my assessment, I had all my school records and a letter from a neurologist (investigation of dyspraxia) who recognised something ND in me years before I knew it was a thing for me so luckily in my case, I had lots of evidence.

But I am a little confused as to how people without a diagnosis are getting reasonable adjustments? Is it different in the private sector or wherever you work?

My occupational health in the NHS (workplace) wouldn't help me without a diagnosis and a report. My managers knew I was awaiting diagnosis and they helped me a lot but I got more official help once I had an official diagnosis. They even recommended adjustments, in fact they recommended most of them. 😅😅😅

@Wimberry your posts are incredibly articulate and informative. I recognise much of what you say, my brother has been assessed for autism by a psychologist in the mental health rehabilitation unit he had to enter after a major breakdown. Unfortunately he has chosen not to pursue a formal diagnosis by an accredited NHS centre. He has been treated for anxiety since his teens. It makes me very sad he missed out in diagnosis and support when he was younger. Ironically I think my dad was on the spectrum too and would have resisted any talk of what he would have seen as disability. It was all about being normal and my brother has internalised those values too.

Thanks @TheGander that's kind of you to say, and I'm sorry to hear about your brother having such a difficult time. I don't know if this info is any use, but in my experience my assessment was not about getting a diagnosis, (it actually took me a good while before I shared the outcome with anyone) but about the feedback and discussion in the assessment.

For example when I talked about feeling that my friendships are limited but not really knowing how to get better at that, my assessor told me that starting friendships and expecting the new ones to be different because I'll try harder/recognise it this time/magic! is not the way to go. I can't change how my brain works and it's too subtle for me to learn. But that because I care about people, and do want to maintain friendships, she suggested I set a calendar reminder to get in touch with certain people. And that's now what I do. It's not perfect, but it's better than just wishing I was better at these things! There were other examples such as how I deal with people in work, where she recommended me different strategies (in summary - use words, eg tell someone you've only got 5mins rather than assume you can convey that you're in a rush or see a gap in a conversation to end it) Having the diagnosis has helped me give myself permission to have downtime.

The strategies were simple but it was useful, and for anyone thinking about an assessment that's why I'd recommend them.

For what it's worth I have a strong feeling my mum and gran were autistic, not that I'd say anything. My uncle definitely is (in a 'classic' way - black and white thinking/monologues/ends up in arguments without meaning to/obsessed with trains). My mum was quite neglectful/emotionally abusive and had very damaging relationships when we were growing up. I thought she had some sort of learning disability or mental health issue as her moods were unpredictable, she was very naive in her relationships, very anxious to the point of agoraphobia at times. She passed away years ago but looking back I do wonder if she was autistic like her brother but masking and trying to fit in. Not that she would have tolerated any talk of disability either, very different generation!

Thanks @Wimberry this is very useful. FWIW you come across as very insightful, resourceful and in touch with yourself. If there is any opportunity I’ll raise this again with my brother, having strategies would definitely help him, he wants close relationships but there too they tend to stall. TBH I live in fear of him having another breakdown, it was so hard to get mental health services involved . He now has a Personal Assistant which has been very helpful, executive function is very hard for him.
Once you have insight that you are on the spectrum yourself, or someone close to you is, you start to look at your relatives in a whole new way! For me it’s definitely my dad’s side, a cousin was diagnosed but doesn’t disclose or engage with the diagnosis and I think a couple of dad’s siblings are definitely non neurotypical. I probably have traits too, I can get utterly exhausted in big groups.

I took note of the suggestions here that I encourage DSis to having a formal assessment. I spoke to her over the weekend, pointing out that a good assessor can offer useful suggestions/ insights into coping strategies etc, and can also suggest specialists or therapists who can help post-assessment if required. I offered to pay half the assessors fee if that would help.

This wasn't well-received. She sent me several long messages criticising my insistence on trying to problem solve rather than just listen to her. Very rude, very angry, all in therapy-speak. I asked what she wanted and she told me she wanted me to sit silently and listen to her. So we arranged that yesterday evening we'd have a call in which I would just listen, say nothing for an hour and then offer no 'helpful' suggestions or comment afterwards so that she could feel heard.

All I can say is that she is very, very angry and hitting out at everyone and everything around her as hard as she can. I'm trying to maintain some adult equilibrium and empathy, but I feel as if I've been metaphorically beaten up. Thinking of what @Wimberry said about ways of categorising people, I think DSis categorises us all (parents, siblings and her ex- husband) as foes. She wishes we were all dead. I can't see a way forward with this, her hatred is too strong. I was hoping that she would work through the anger to something else, but there was nothing.

No idea what to do now. No real idea of what's going on. I may need to go NC for a while, perhaps permanently.

oh God, @Kipsmum This must be hell, and heartbreaking, for you

She wishes we were all dead.

There's something very, very, very wrong and it doesn't like it's got much to do with autism.

Has she had extremely traumatic events in her life, or used drugs too much? (I cant remember if you said about the events, sorry).

When you describe it like this, it reminds me of my mother's sister: She would go through phases when everyone was out to get her - we never thought to categorise it, it was just 'mad Aunty M having one of her turns'. She would cut herself off, my Mum would be really hurt for a while but just let it rest, and when M was ready, she'd bounce back like nothing happened. Maybe just step back and wait. It will aways be upsetting, but you've got to accept there's not much you can do, and hope it won't last.

Thank you, @DucklingSwimmingInstructress I feel completely at sea. I can't help wondering if she's having a breakdown of some kind.

No extremely traumatic event/s as far as I know, but she was always a private sort of person. I was braced last night, dreading that she'd tell me about sexual abuse or something that would blow everything up, but she was focussed on several incidents that I have little or no memory of, 40+ years ago, which she is clearly very bitter about. Things she says I or the other family members said or did. How we all (including her former husband) worked together to make her feel like nothing, lower than low, looked down on her, patronised her, gave her an inferiority complex, and how she's not going to take it any more.

It was delivered with real hate and fury. Something is very wrong, and I don't think — as you say — it has much to do with autism.

It does sound like some sort of breakdown. From what you've said she uses therapy speak. Has she actually been through therapy, or is this language she's picked up online without realising the depth and context of therapy-language? Good therapy is actually often very difficult to go through. If she hasn't then do you know anyone who could suggest she goes to the doctor? Since she rejected your suggestion, she won't listen to you :(

I ask this kindly, but from her perspective do you think there is some truth in what she says, to some degree at least? It's very clear that you love her and care for her but is there the possibility that others have made her feel this way? (the answer may be yes, or no, or partly. I'm just asking the question).

Having wondered if that's a possibility, I would say that you don't have to listen through all her fury again - you are not, and can't and shouldn't be her therapist. Prepared to be shot at here, but is there a chance she could have EUPD? (used to be called borderline personality disorder). Just a few things you've mentioned in her behaviour sound as though it's not quite impossible.

You need to take care of yourself.

There's hopefully a chance that if she is getting therapy that this is a tsunami of emotion from here and that it will settle down and she will gain some perspective. A sister of mine did much the same and we're rebuilding our relationship after admittedly some years of not communicating.

If there is something in what she says or not, in the end she will have to learn to live with her feelings and emotions or else she may well become a very bitter and angry person in old age.

Again, take care of yourself @Kipsmum

I'm sorry to hear that @Kipsmum , and it sounds like you're really trying to put her first and that's what you're getting back. She sounds a little bit like my mum (who may or may not have been autistic) she was very bitter, would perceive slights and ruminate on them for years and hold grudges. I do think my mum genuinely struggled to consider other points of view, or even realise that there were other points of view to be considered (one of the reasons I suspect she might have been autistic, in hindsight)
The impact of that is she assumed everyone read a situation like her, so if she felt hurt, she assumed everyone would know, and that it must have been intentional or it wouldn't have happened/would have been stopped, if you see what I mean.

You were kind to ask your sister exactly what she needed and offer it. I think if you've got the energy, you could calmly but factually tell her that you have heard her views, that it's upsetting for you to hear that view, and that you respect the way she she's it but she also needs to respect that you have a different recollection. And be clear that what she is asking of you is too much and for that reason you are going to need to distance yourself a little to protect your own feelings.

She has the option of therapy as a safety net, you can't be there as her punching bag. It doesn't sound like it would help her, and it's clearly impacting on you as well.