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Parent with undiagnosed AS (long)(105 Posts)
I'm a bit wary of posting this. I know there are lots of posters who have children with ASD or Aspergers, and I'd like to be clear that I'm not somehow attacking people who have these diagnoses, or lacking in understanding of them. There is almost nothing out there for NT children of AS parents, only a Wordpress blog that seems to have closed, and I don't have anyone else to talk to about this. I don't know anyone else in this situation.
My parents were abusive and as an adult I eventually went NC with them for the sake of my mental health. I do not think I am just clutching at straws trying to explain my childhood; I would bet my kidney that my father has undiagnosed AS or ASD. I always used to think: it's like he is autistic. I just never made the leap to thinking he actually was, because I suppose I assumed someone would have picked it up.
I'm absolutely not saying having an autism spectrum disorder means you are going to be abusive or treat other people badly; however I do think the way it manifested in my father has been very damaging for me.
The main symptoms/traits he seems to have are:
- Mind blindness / lack of theory of mind. He has never been able to grasp that anyone else has different thoughts or feelings to him. When I was a child he sometimes looked after me alone and would just give me toast instead of a proper dinner because he was happy with that. He couldn't comprehend that I might want something different.
- He thinks if something upsets or confuses him everyone else will feel the same. And that if not, ditto.
- Not understanding how I could know things he didn't. Often asking how I knew about things that are common knowledge.
- Repeating the same stories and jokes over and over. It's as if he'd learn a joke was funny and tell it over and over expecting it to have the same effect. Some of these stories reflect very badly on him but he doesn't see this.
- Speaking to people in an incredibly patronising way and not understanding why they take offence. He was in hospital for a while a few years ago and several nurses with non-UK accents thought he was being racist as he kept asking them to repeat what they said as they weren't speaking clearly; he is actually a bit hard of hearing (which should have been better flagged up to changing staff) but it sounded like he was saying they weren't speaking English properly. He understood why they thought he was racist, and he didn't mean to be, but he kept doing it, even though he was given suggestions of better ways to say it.
- He has also been known to ask people if they have ever heard the phrase "that's not rocket science", and be confused and annoyed when they think he's being patronising.
- Not understanding what is and isn't an appropriate topic of conversation, eg wanting to talk about finance at a child's birthday party.
- Not understanding sarcasm, hints or social cues. Not understanding why some things might be embarrassing. Behaving in absolutely socially excruciating ways.
- Not understanding teenagers. If ever I slammed a door he would ask, genuinely perplexed, why I was trying to damage the house.
- Over-attachment to objects. He was obsessed with safety and would unplug all electrical appliances at night. But they had a leaky kettle that leaked boiling water on my hand, resulting in hospital treatment, and he wouldn't get rid of the kettle and got angry when he was asked to. He also wouldn't get rid of a TV that was a fire risk.
- Meltdowns. I don't know how else to describe them. The worst one was when I took the video out of the video player without asking and the counter reset.
- Asking unknown callers "how did you get this number" and grilling them to a ridiculous degree. My uni housemate once phoned my parents' house by accident instead of my mobile; she was trying to get hold of me to say she was going to hospital with an injured back. My dad spent ages asking questions about how she got this number and expressed no concern about her injury.
- Worked in a field with a very high proportion of people with autism. Was made redundant and never got another job as he had no practical, social or interpersonal skills.
Before I went NC, I tried mentioning the possibility of AS to my mother and sibling. My mother was extremely resistant to the idea at first, then said it might be worth looking into. My sibling said: that's just OCD (no, he has OCD but it doesn't explain everything else) and wouldn't it have been picked up (not necessarily!) and what's the point in a diagnosis anyway, what difference would it make.
I didn't mention it to my dad, because I have long since given up trying to have a relationship with him; not because I am some heartless cow but because he is so unpleasant and angry and difficult that I had to withdraw.
My dad did some awful things to me in my childhood, which I'm not going into because it's possible there's enough detail here to out me; suffice to say there was abuse, and I went NC partly because of that. Maybe I'm just desperately searching for answers as to why my parents seemed to love me and think well of me yet treated me very badly without seeming to realise that they were.
I realise that's the case with a lot of abusive parents who don't have AS, but...
My mother, I'm not sure about. She seems to have some traits of narcissism, and also some autistic ones; I just don't know. I have had to bow out of the whole thing, not because I am horrible and selfish but because their behaviour was so toxic and damaging that I was on the verge of a breakdown.
My sibling is the golden child and is very invested in the whole family being good and perfect; I am pretty much NC with them too as they were very unsupportive and unhelpful about the issues I was having. They originally suggested I go NC but then freaked out when I did and turned flying monkey on me. They also did some other shitty things including telling other family members I was in therapy when I had made it clear this was confidential.
Anyway, as it stands I am NC. I think my father has AS; I think he would have had a much better life, as would his family, if this had been picked up. I don't know what can be done now though. I've thought about writing to him and suggesting he try to get diagnosed; I don't feel able to phone him because I'm terrified of the verbal abuse I'm likely to get. I don't know if it's something that could be dealt with in an anonymous safeguarding referral, as he has contact with my sibling's children. I'm not saying undiagnosed AS is automatically a safeguarding issue, but in this case it may be.
I suppose I have a fantasy in which he gets a diagnosis, has autism-informed counselling through the NAS and actually changes. I'm sure he would be happier and less frustrated. But that's not going to happen, is it? I feel like I am the only one who sees this. It is driving me a little mad.
I don't think I am jumping too quickly to AS. I have thought for years that he seems to be autistic. I don't think I am attributing traits of narcissism to AS; it's quite hard to discuss it with anyone as people sometimes say I'm just looking for excuses for him being an asshole, and I don't think that is what I'm doing.
Please don't tell me how unfair I'm being not speaking to him. He has done some fucking awful things in the past that I haven't detailed here and it's not a failure of understanding on my part. But I feel guilty knowing that he probably has this, and that nobody is doing anything to help him get diagnosed, and I don't know what I could do about it. I could write to his GP, but he has had the same GP for years who has failed to pick this up and has missed other very serious things in the past but my dad won't change GP as he can't handle change.
I am aware of the Stately Homes thread and post on there sometimes (under my usual name, have name changed for this) but am not sure people who know about AS would look on there.
Any advice would be welcome but please don't criticise me for going NC.
Thanks for your reply. He is high-achieving; I suppose I hoped he could intellectually learn about how to negotiate interacting with others, get some help with how to cope with his own frustrations, etc, as I think it's probably quite hard for him.
I do think it's potentially a safeguarding issue, in that he can get very angry. Some of that was directed at me when I was little. I think his behaviour is potentially emotionally harmful, but of course it's hard to quantify that. Just that having an adult basically explode with rage isn't great.
People are very accepting of him in my family but in a toxic way, in that no boundaries are set, nobody else is allowed to object to his behaviour, my mum kind of flaps about and if anyone pointed out that he was maybe damaging to his kids she got upset because she was being criticised and then the real issues got lost.
Thank you for saying NC is the best option and that there's nothing I can really do. I could try talking to him about it but I've reached a point where I just can't cope with the way he behaves towards me. I don't think he would listen if I tried.
I have just rung my local early intervention hub and had a long 'no names' chat with a very helpful social worker who said that if my sibling doesn't have any concerns then there's probably not much I can do other than advise him to go to his GP, but if I'm really concerned about the grandchildren I can make a referral. However I know how high their thresholds are and I don't think anything would be done.
It's just hard because with some conditions or issues there would be action you could take to get help for him and the people around him. I can't help beating myself up for not suggesting he try to get diagnosed years ago.
It does explain an awful lot of things that happened in my childhood.
PS thank you for sharing your experiences; I'm glad you've been able to help your daughter
He's not going to change. It's like asking a dog to become a cat. If you want a cat, get a cat. Your dog can't be a cat for you, even if you need one. Don't beat yourself up about it.
Much of how you described your dad, OP, describes me.
I'm glad for thelonggames daughter that she has such a determined mum.
I have a parent who I am pretty sure is AS and she thinks so to. She is far from High acheiving though, she has struggled all her life, been depressed, and angry and everything in btween. She is not horrible, or cold she is more able socially than your Father I think. She was not abusive (though her parents were ) - I have forund the likliehood she is AS helpful only in that I stop expecting her to change - I deal with her as best I can and have a moan to DH when she gets on my nerves. She is hundreds of miles away which is a good thing and a shame at the same time.
I fully expect she will need support as she gets more elderly and I expect she will be difficult to deal with. But I am fortunate in that her personality is very far from racist / shouty OAP as you can get. She is very radical left in her politics and cares too much about what other people think. Not that that stops her being very blinkered and solipsistic at times.
If your DF is not interested in exploring AS you cannot force the issue. It really does have to come from him. An AS adul is not mentally deficient and if he is 'happy' to continue being an arse that is up to him. A diagnosis is helpful for a child - for an adult it can help explain why they have felt different all their lives but it won't offer any actual external help. Just deeper self-awareness really.
I think if he is horrible and you don't want to see him then take some time out and do not feel bad about it. It is your life now - you are in charge - don't let him control your decisions.
Thanks for the reassurance that I'm not horrible. It's very much appreciated.
Oh, icecreamsandwich, I smiled and nearly cried reading your post because of the connection I felt to you! You are describing my life with an AS brother and like you, I worry so about offending people.
The telling jokes and stories over and over because he has learned they are funny - yes! My brother met a girl once and the girls cousin said she was 'a bit desperate.' Brother has recounted this story over and over, giggling helplessly. Why? Have pointed out its actually an insult to him but he doesn't see it.
He doesn't work - lacks the interpersonal skills I think. He just sits at home day after day after day, 'going to the library' and making plans of what he'll do when ... when what? When he's cured? I don't know!
Our parents are dead and I just fear for our future. I want to go NC, but I feel too awful. Anyway sorry. I had to reply to you!
Thanks longgame and sorry to hear about your dad. Don't know Mind if has forums - I will investigate.
'She'd expect the whole world to change for her rather than changing her expectations.'
The biggest problem I have with my brother now is how he behaves in public. He whines - he fell over once and it was totally his own fault but gave this loud yell/roar of agony and made such a fuss. So embarrassing.
He wears completely inappropriate clothing - huge, huge hoodies (I know this is a sensory issue but they look awful) that are stained a lot of the time.
Talks loudly and about inappropriate things (the finance at the birthday party made me laugh! Yes, yes!)
It's so hard.
Sandune I'm so sorry to hear about your brother. It must be hard feeling responsible for him if your parents are gone. Really really tricky. I want to say it's okay to go NC but appreciate it isn't that simple.
The other thing about my dad is that at times his behaviour bordered on being sexually inappropriate when I was a kid, but I can't remember the details in a concrete enough way for it to carry any weight.
I remember him telling me that a child in x situation that he had experienced (something to do with religion) would be very upset and confused, but not getting that other situations could make me upset and confused.
If anyone reading has recognised my family please don't tell them about this thread.
As to finance at the birthday party, it would be funny if he didn't get explosively angry with me for explaining it's not the right time. My sibling used to be very distressed by my dads habit of just talking at the grandkids about things that didn't interest them.
Sand dc2 would do that and dc1 is getting very annoyed about it. dc1 has told numerous time that he just want to tell his db 'to just man up!'.
I know that dc2 reactions is linked with him being oversensitive to touch so when he gets a knock, he wails.
It doesn't help dc1 though....
ice I can relate to your post too, both because of dc2 and because of DH.
I agree that you can't do anything about your DF. To get a diagnosis, he would need to WANT a diagnosis and my guess is that, now, he just doesn't.
An 'armchair' diagnosis (not that I think you're wrong, far from) has the advantage to help you understand why he acted like this. eg that some of his reactions weren't about being angry AT you but not coping with an unplanned change.
For me, this is always worrying/sad to read posts as yours and the ones of pp because i'm always wondering what are the consequences on dc1.
Oh it is also quite well known that the hardest to live with an undiagnosed adults. Basically they've hd no tools/support to help them make sense of the world which is leaving bewildered a lot of the time.
They also tend to assume that it's the others who haven't a clue (both because of the black and white thinking and because, I think, it would be hard for anyone to recognise they get things wrong so often).
Stress from not having your routines followed, struggling in social relationhsip, the efforts needed to do what we would consider 'simle task' means they also can get angry. As any one of us would. It's just the intensity that is different.
All that to say that I don't think you should be feeling guilty to be NC. As a mum, I don't think it was the 'wrong' decision for you. At some point, it is essential to protect yourself too.
I just can't help imagining how different things might have been if it had been identified and not brushed under the carpet. I think it's different for DC if it is named and talked about.
Oh it is also quite well known that the hardest to live with an undiagnosed adults.
I didn't know that and it's very validating and a bit of a relief actually. It's just so sad thinking 'what if'. The thing that shocked me was how reluctant my mum and sibling were to encourage him to get diagnosed. I thought they'd say: oh my goodness, you're onto something, it all makes sense now.
Nope, they just freaked out and insisted that's just what he's like. It's an unhealthy dysfunctional family which doesn't help!
There is almost nothing for children of AS parents, diagnosed or not. Just looked on the NAS website and they have advice for parents, siblings and partners but not children. Do they think we don't exist?!
There are a lot of people who think that, if someone can manage to hold a job and have a family, then they can't be that affected. Some ppeople might even question if the diagnosis of AS that was made wasn't actually that accurate.
Because, you know, no person with AS can be in a relationship and have children
On the top of that, there is this idea that if someone is abusive/angry/hard to live with, it's nothing to do with the AS. It's all about the fact they are abusive/angry/difficult to live with... Therefore not an AS issue.
I think this will change as more and more people will be diagnosed and then get into adulthood. You need to remember that When your father was a child, AS didn't even exist.
I actually didn't know it didn't exist back then. That's helpful to know, thank you.
I do think the anger/abusiveness was connected to the AS though not just because of it; no doubt his own childhood experiences also played a part. But the meltdowns, the mind blindness, the utter social inappropriateness and not understanding how I was affected by this...
I think AS didn't make him abusive, but was one of a number of factors that conspired together, and it affected the exact way in which he was angry/difficult/etc.
Yes I agree.
Some hurtful responses are clearly linked with AS and if you don't know about it, you will take them at face value (and be hurt)
not that it's that easy when you do know about it but at least you can step back a bit
And then his own difficulties will have 'made' him a more angry person (again quite understandable)..
For me though, the major difference is that when someone is abusive, it's something they are doing on purpose. An abuser wants to hurt/control the other person. With AS, that person will do something that is hurtful or will make people unconfortable but it's never on purpose.
In effect, it can be just as hurtful as if it was abusive for the receiver but it's not abuse. And it affects people around, especially children or a partner. And it can make it extremely hard/hurtfull for them but there is little they can do about it .
When you talk to people with AS, they will tell you that they are aware that people are getting hurt around them but that they usually have no idea what they have done to do so. So they end up very sad to have 'misbehaved' again (and hurt someone they love) and frustrated not to understand why so it doesn't happen again.
OP I have/am experiencing some of this.
I've been sure I was on the spectrum for several years. Have a DC (undiagnosed) who is pretty obviously on it too.
But it's only in the past few weeks I'm looking at both my parents and seeing it in them too. There is no escape!
I wrote quite a bit about them the other day on a autism and work thread somewhere.
I agree there isn't much help out there for kids of as parents. I think there is one page on the nas website though. Although I found it more aimed at those with fathers on the spectrum rather than mothers, and as we know, they present differently.
I've had times of going NC. I think that'd prob be best for you as you don't seem to gain anything from your relationship with him.
I have no intention of mentioning my suspicions to my parents. For a start my mum doesn't think things like as exist and it's just 'badly behaved kids'. Neither has insight to see how their behaviour is different from others and they are both so hostile to change.
There was abuse in my childhood too. But tbh I'm finding that easier to come to terms with now I can see a reason for it. With the asd interpretation I can see that they never meant me harm but were just ill suited to a lot of the aspects required of parents. As an asd parent myself I'm trying to prevent this cycle repeating by delegating a lot of the parenting to nt DP.
Being an asd parent isn't all bad and I wouldn't want people reading this thread to think that. There is enough discrimination against us! Imo in some ways my traits help me parent eg I'm very consistent with boundaries, my special interests mean I have a lot of knowledge to pass on so my DCs have excellent general knowledge, I am honest with them and will discuss 'adult' topics (appropriately) with teenage DC (they say other parents don't do this) because I don't embarrass easily. Etc
Have you thought of setting up a Facebook group for teen/adult kids of asd parents? I'd def be up for joining that and having a place to discuss ongoing things. Mn is a bit limited for things like that imo.
This sounds very similar to my father. It was and is hard having a father who is incapable of showing an interest in anything other than his own narrow field of expertise and who is often very inappropriate. He's in his mid-70s now, though, so too late for diagnosis to have any meaningful point, so I mostly just shrug it off as getting angry is a waste of my emotional energy that makes sod all difference. I hear you though.
Maman: I don't define abuse in the exact same way that you do, because I think you also need to look at the person on the receiving end and how they are affected. I was emotionally abused, neglected, frightened and at times sexually harassed. The reason for that (eg autism or narcissism) is in a way academic; it doesn't change the wounds it caused. Knowing it probably wasn't deliberate is of limited relief and in a way is worse because it makes me wonder even more strongly 'what if'.
I do get what you are saying; that perhaps there should be another word when it's not knowing, deliberate, on purpose.
But there is always some explanation for abuse, and the majority of abusive parents do not simply do it on purpose (am speaking partly from a professional perspective now as I do something mental health related). A few do. But the majority of parents who lose their children to foster care love their children and did not set out to victimise them, but did so through a mix of unresolved childhood issues, personality disturbances and/or attachment disorders. It is perhaps too simplistic to say that abuse is entirely deliberate and a conscious choice, and if it's not, it's not abuse. This, too, is a spectrum.
I get that it must be terribly hard to hear because you know your DC doesn't mean to hurt anyone and what if they grow up and are labelled as abusive? I get that. I don't mean to make you feel bad. But it sounds like you have gone from 'my child doesn't mean to hurt anyone' to 'you weren't abused'. And I'm sorry if this comes across terribly hurtfully, I'm trying to sound gentle and probably making a massive hash of it.
It's just that, for me, having a reason doesn't make it feel any better.
Athena I couldn't find anything on the NAS site! I don't suppose you would be able to post a link to the page you mentioned?
I don't want people to think ASD parent = bad parent either (it's perhaps a potential factor, but only potentially) and that's why I was wary of posting at all. I did think about setting something up, though not for teens. That would be way too much responsibility as you would need to have safeguarding policies in place and it could throw up some tricky situations and you have to be careful with things like that. But I don't want that coming up on my Facebook as it's private and if it was a secret group nobody would find it. Maybe a community on reddit or something would be better, I don't know.
If I'm honest I'm wary of being the person to set it up and moderate it! I wonder if the NAS has anything on FB?
Dinah I hear you too.
Google has delivered!
I got confused and thought that was for people with autistic children.
It's not that helpful, really, but at least it exists.
Actually I think that page is terrible and I'm trying to call them to say as much.
It makes children responsible for their parents. It doesn't signpost to other services. It uses terms like "cross" and "shouted" that can mean many different things; it says you aren't the only young person who is shouted at which may make a child think what they are experiencing is the same as what others experience.
Nowhere does it acknowledge how confusing and frightening it can be, or suggest other people you could talk to.
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