DM not acknowledging she did have a disabled DC

[Carebearsonmybed]

I'm autistic. Adult diagnosis. DM aware.

In a recent conversation she was discussing how hard it must be for Mums with disabled children, in reference to her seeing a Mum with an adult child in a wheelchair in a shop.

She said she couldn't have coped with a disabled child and how hard it must be when they need lifelong care.

Afterwards it dawned on me that she hasn't accepted my diagnosis and doesn't recognise my autism as a disability.

I did have obvious additional needs as a child which were unmet both at home and in school. These needs have continued into adulthood. I am on the highest care component of PIP and have a full time carer.

We have always had a difficult relationship. I believe she is also autistic and have told her this but she did not accept it.

I've grown to not expect anything positive from her but this comment has really stung.

AIBU that if you have an autistic child you are a mum of a disabled child?

That doesn't exactly clear it up though. Usually, unless it's a purely transactional arrangement, people have at least some level of social interaction before they get to the stage where they have sex with someone. And even with casual sex based on an initial physical attraction alone, there has to be some sort of social and emotional bond that comes after it, if that relationship is ever to move onto a more solid for permanent footing.

When that poster said 'date' she didn't mean literally go on individual dates with individual people. The fact that you've only been on two 'dates' isn't really the point. She meant 'date someone' in the sense that you are repeatedly arrranging or choosing to spend time with a specific person over a period of time, which ultimately leads to forming a committed and exclusive relationship with them.

The ability to do that just seems totally at odds with the way you say your autism manifests itself. It's absolutely mystifying to most of us, that so many people with autism talk about their inability to function in anything approximating 'normal' social interaction and yet they often seem to have romantic partnerships, marriages and children. I accept that it must happen, but I can't pretent to even vaguely understand how.

She doesn't see you as a "disabled child" because at the time she failed to see your autism and fight for support for you.
She never had to go through what other parents did for their disabled children.

It doesn't mean you aren't disabled, it just means your mother failed.

I require actually prompting. Sometimes to the point of frustration in the person prompting. It's not always that I just don't want to do it, although I actively avoid sensory discomfort, but it doesn't even cross my mind to either most of the time.

When I lived at home as a child/teen/young adult, I didn't like doing things like the dishes, it would cause me discomfort and agitation and stress but I didn't have to do it so often. When I lived independently and I had to do these things for myself I did it and powered through until I just couldn't. Now I'm living back at home, and require a lot of prompting or I require someone to do that task for me. There are obviously some tasks people can't do for me, like showering and brushing my teeth. Both negative experiences for me.

"The centre of my brain responsible for creating habits and making these things autopilot is much smaller and I have less of the cells available that form these connections as I never developed them. It's a developmental disorder.

You might view brushing your teeth as one tasks but it's about 20 different tasks that my brain hasn't been able to autopilot. Logically you could probably see how it'd about 20 steps to complete the job but you wouldn't see it as first I need to motivate myself and mentally prepare myself, then I have to start my routine to make sure water doesn't dribble down my arm, then I need to make sure I've got the right towel because some are like sandpaper, I need to brush my hair out of my face but I don't like the tugging sensation when I catch a knot, then I need to hope we've got the right toothpaste, etc. You'd just get your toothpaste on your brush and have at it.

I can't do my own laundry without prompting and hovering, and it's like I require a project manager for my life just to make sure I function at a very simple and basic human level."

This is so well articulated, thank you.

Yes, for me a task like having a bath takes a full day and involves having someone with me the whole time.

Re: DM I imagine most of her family had ASD/ND. I think so much that was abnormal was normalised that she is blind to things like not leaving the house being a problem.

DM didn't have friends or visitors to the home growing up so me not having that either didn't ring alarm bells the way it would/should to NT Mums.

It’s interesting, though, that there is another thread currently talking about nd at oxbridge and many on there are commenting that they or their dc don’t feel it as disability - I think because being surrounded by people who are more similar can contextualise it. Some very, very NT people would probably feel a bit “ disabled” at oxbridge. Suddenly being efficient at brushing your teeth seems a bit lame …

Sorry if that was blunt! I didn't mean it so bluntly, also autistic myself. My parents were the same and failed me despite some very clear signs.

Yabu - having asd diagnosed as an adult, is not the same at all as being lifelong in a wheelchair or a child with medical needs
you know what your mum meant, and she is correct.
honestly an adult getting an adult asd diagnosis is not the same at all as having a disability considering you’ve managed to get through life so far?
I find this very weird when people want to put all disabilities or issues on one level and make out your struggle is the same as someone else who has obviously got more complex needs

"That doesn't exactly clear it up though. Usually, unless it's a purely transactional arrangement, people have at least some level of social interaction before they get to the stage where they have sex with someone. And even with casual sex based on an initial physical attraction alone, there has to be some sort of social and emotional bond that comes after it, if that relationship is ever to move onto a more solid for permanent footing.

When that poster said 'date' she didn't mean literally go on individual dates with individual people. The fact that you've only been on two 'dates' isn't really the point. She meant 'date someone' in the sense that you are repeatedly arrranging or choosing to spend time with a specific person over a period of time, which ultimately leads to forming a committed and exclusive relationship with them.

The ability to do that just seems totally at odds with the way you say your autism manifests itself. It's absolutely mystifying to most of us, that so many people with autism talk about their inability to function in anything approximating 'normal' social interaction and yet they often seem to have romantic partnerships, marriages and children. I accept that it must happen, but I can't pretent to even vaguely understand how."

My 'relationships' with men have not followed the typical pattern. I do see sex as transactional. I don't attach emotion to sex. I've never had sober first time sex. When I was young I had the kind of body men would come onto. It didn't require social skills on my part. Regarding cohabitation it was a practical solution to the absurdity of paying 2 rents instead of one. I'm not a romantic person.

OP you mentioned childcare earlier. That's another thing I honestly don't understand when you talk about the extreme sensory issues you have. You say you have meltdowns if your sensory needs are not met. I don't understand how you ever coped (or thought you'd cope) with pregnancy, childbirth, the medical procedures and ante-natal processes and then the relentless sensory overload of child rearing itself. If you can't cope with simple things like taking a bath or cleaning your teeth and need to be prompted to do the most basic self care and hygiene tasks then how on earth do you bath a baby, change nappies and deal with a clingy, screaming fractious infant?

You are here complaining about your mother's lack of empathy for you and your needs, but I think this is going to come full circle for your own children. I imagine they are going to have some serious issues of their own, frankly. I think perhaps instead of focusing your own mother's perceived shortcomings, you accept that no parent is perfect but we all do our best given our own quirks and (sometimes quite significant) limitations.

Oh no wait a minute you said you cohabit with your partner purely "to pay two rents instead of one" but elsewhere you said you have had to move back in with your parents? Or does your partner live with your parents too now?

Perhaps the children are her DPs? But even so I am confused as DP is her full time carer, and they cohabit but she lives with her parents? Do the children live with your parents too op? Presumably if you struggle with even brushing your own teeth your parents must end up helping out with childcare? I don't see how they can fail to miss how disabled you are or what an impact it has had if they are supporting two extra adults and their children? Your mum must have some real cognitive dissonance going on

To get a diagnosis, it has to be disabling.

I am in a "high flying career" and my autism is definitely disabling. Just because you don't see how people struggle doesn't mean they are not struggling.

Many blind people or people in wheelchairs have high flying careers too but you wouldn't dream of going about saying they're not disabled would you?

You'd be surprised how many people think like this. I have a quite severe physical disability and a high flying career but so often on Mumsnet (and elsewhere) you would think that "disabled" is interchangeable with "not working and living on benefits"

Until 1994 you had to have an intellectual disability in order to receive a diagnosis of autism. If you were of normal intelligence you couldn’t be autistic. So that’s why your mum thinks autism = non verbal, because that’s what everyone including all the doctors thought until 30 years ago. A lot of older people still think that’s the case.

This post is really offensive. Autism isn’t an intellectual disability, feeling a ‘bit disabled’ because you process information in a typical way isn’t ‘disabling’ compared to being in a class of ND people. Being in education is the biggest mask of autism, it’s once they leave that the same parents who ‘don’t think their children are disabled by their autism’ are then shocked when said adult children have breakdowns in their working/home lives.Depression, anxiety, unable to meet self care needs, not paying the bills, houses unkempt, not being able to hold relationships or their spouses leaving them due to being unable to live with their difficulties. ‘But you coped fine at school! But you’re so clever!’ are lines used like it’s the autistic persons fault for not being able to manage day to day life.

I have two children diagnosed with ASD. Both incredibly academic, both at different schools. The one at the school who support his autism needs over academic expectations is the one who’s thriving. Downplaying ASD needs because a person is academic or has other high abilities is a one way ticket to a breakdown later in life.

I think you are not following what I am saying - which is almost the same thing as you. There are NT contexts where it is very disabling. Contexts where those sorts of skills you allude to are valued.

I've been homeless several times, the idea of my DM ever helping me in these situations is laughable!

I think what I'm getting it is that my DM was aware of many problems I had as a child & adult: no friends, bullied everywhere, taking years longer than peers to complete education despite intellect, unable to flat share, unable to hold onto a job, relationship difficulties, lack of self care, rigidity of routines, inability to talk to strangers, meltdowns, hypersensitivity, auditory processing (thought to be hearing) difficulties, extreme clumsiness, poor decision making.

I thought (assumed?) that after knowing about my diagnosis she would put 2&2 together and realise that's what all these things were. That I wasn't a badly behaved, difficult, fussy, cheeky, unfeeling, messy, lazy, greedy, selfish, naughty, shy, disobedient child but a child with a substantive disability.

I was wrong and I'm just realising that now.

Re: childbirth/childcare. My consultant acknowledged my autism (pre official diagnosis, as it's so blindingly obvious to anyone with the right training/experience) so was in favour of my home birth/no non essential intervention birth plan.

I used the woman who must not be named on mn's baby care book and followed her strict routines which suited my rigidity. DC went into paid childcare asap and did 50 hours a week.

In a previous post you said you were living back at home?

Op I can really hear the hurt in this post.

I can see you ( understandably) want to feel your mum acknowledges that none of these negative traits were your fault in the sense that you were just doing them on purpose or because you didn’t care enough to stop. I’m wondering, would it help to stop worrying about defining disability and just ask her directly if she now understands how and why you behaved the way you did? As this thread has shown, attempts to define the terms can be a distraction.

Might mummy be ND and not mythical TV-mum?

Op has said she thinks her mum is ND. And that she forgives her for that reason. But I think she is wanting acknowledgement of the fact some of her traits were tied to her diagnosis. I think it’s not impossible that her mum might think that but that they are both tripping up on definitions and concepts of disability.

@CassandraWeb you seem to be trying to catch the OP out. If you think they are not a genuine poster, report them.

"In a previous post you said you were living back at home?"

No that was me quoting another poster.

You can't quote/reply to a post that already has a quote/reply in it so I used quotation marks but for some reason my quotation mark only started halfway down the other poster's comment.

If you read it through again you can see the top few paragraphs are the other poster and my reply to them is beneath the closing quotation mark.

I left home as a teen and never went back/was never welcomed/allowed back. Even if I was terminally ill my DM wouldn't have me live in her house.

I've never lived in her current house, it's not my home. We both now live hundreds of miles from where I grew up.

If I didn't have my DP I'd be in some form of residential care/institution. I realise I'm lucky and appreciate this.

In terms of social communication I'll have what I think is a conversation but afterwards the other party will say that all I did was talk about myself, that I was rude and made inappropriate comments. I can't do the correct facial expressions and can't read others' body language. I take everything literally. I'm vulnerable to exploitation and overshare. Now that I have support I can be in social situations without coming to harm.

She sounds like my Mum, my brother is clearly autistic and she has held up back so much in his life. Very sad as a 50 year old as his life could’ve been so different