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?

"How does someone with such high needs get through to adulthood undiagnosed?"

Even by 80s/90s standards I should have been picked up & diagnosed.

I have what can be referred to as a spiky profile. I have a genius level IQ, could memorise textbooks & regurgitate them in exams so got to postgrad education level but I can't have a normal face to face conversation. Think a female rain man. I won't do self care without prompting & have meltdowns if my routine is changed or I don't have my sensory needs met.

Teachers just put me on my own in a corner with a book. I spent almost every break & lunch on my own. I didn't cause disruption so no one cared.

I had needs, they just went unmet.

My DM didn't recognise it as a problem that I only left the house to go to school. Maybe this was her experience?

I was self harming and had an eating disorder but nobody noticed.

After I left school I was very vulnerable as I'd had almost no social experience, this lead to sexual assault amongst other things, I wasn't able to keep myself safe due to not having theory of mind etc.

The law disagrees. Autism is a disability under the Equality Act.

The welfare system disagrees. PIP is a disability benefit.

The op disagrees, she identifies herself as disabled.

But ok, you know better, as a stranger on the internet.

If you think your mum may also be autistic, that might explain her not acting in a way you expect her to?

So when you left home, you were unable to shower, wash hair, brush teeth, dress etc, unless you had someone to prompt you? And your parents did this when you were at home but thought nothing of it? Or by prompting, do you mean self reminders?

My autistic adult DS (diagnosed as a child) does not consider himself to be disabled.

I therefore do not consider myself to be the mother of a disabled child.

It is extremely easy to get used to doing the prompting for a neurodivergent young person.

Such young people have been seen in the past as scatty, disorganised, lazy, daydreamy, etc.

I think a lot of people don't see autism as a disability. My son is non speaking, we do 100% of his care, no danger awareness needs a special needs pram, wears ear defenders full time, physical stims etc and people still don't see him as disabled as he "looks normal" (constantly told this). He has a very "obvious autism profile" so I'm not surprised those with a "rainman" profile aren't seen as disabled.

(No saying any of this is right!)

YANBU, but sadly mumsnet isn’t the place to help you feel understood. There’s a massive ableist, anti-autism rhetoric here atm. You’d be better off finding an ND community to post in.

Does he claim PIP / DLA?

DM, every teacher, adult & child who spent more than a few minutes with me knew there was something 'wrong' with me. But because I was a girl/female and didn't cause trouble I was ignored/shunned rather than assessed & diagnosed.
I was called a variety of names- odd, weird, a loner, rude, quiet, difficult, stubborn, volatile, argumentative, antisocial, aloof, a freak, mad.

But it was more labelling me as having personality faults rather than having a disability.

I totally do get where you are coming from OP

It's very possible to have life limiting autism - or for it to become life limiting due to lack of understanding and not meeting needs

There was far more 'telling off' for behaviours in the past, as well as ignoring them and forcing the child to do things they weren't comfortable with. That can result in life long anxieties, lack of self confidence etc. Where now a child with a high IQ who can become overly focused on specific subjects, but struggles socially may get diagnosed and be dealt with by being understanding and supportive, some children would have been told to stop being silly, forced to do things, and the anxiety increases.

It can fully encompass and infiltrate a persons life. From the autistic elements and also the elements of being abnormal, silly, using energy masking until you are exhausting

Some people can be completely broken by it by the time they reach adulthood and have no idea left on how to behave or be accepted by others. Not saying that for you the issues were worsened by the lack of acknowledgment and help from others, but certainly it can happen - and rather than helping with tools to learn to adapt to change - methods to make it easier to do things, instead every element is wrought with anxiety until it's very hard to function

I do think you have a disability and one which impacts you massively day to day - but bearing in mind some parents were conditioned to just drag you out/put you in the clothes/continue their life without thought to you when you're a child - they aren't going to suddenly accept your disability as an adult. Especially if they made zero adaptations for you when you was young - essentially it didn't impact them as they just ignored it and told you it was your fault

"So when you left home, you were unable to shower, wash hair, brush teeth, dress etc, unless you had someone to prompt you? And your parents did this when you were at home but thought nothing of it? Or by prompting, do you mean self reminders?"

I don't have the 'sense' of socially acceptable self care that NT people do.

I'd only do self care as a last resort when I'm very physically uncomfortable without someone to tell me. I hid a lot of this from DM like wetting the toothbrush, running the bath but not getting in etc.

I can't use showers- I get sensory overload. On my own I only wash my hair once every few weeks. Same with toothbrushing. I'd wear the same clothes night and day for several days.

It's only since I've been cared for properly I realise how much I was neglected as a child.

Oh totally. That's why I keep in contact with her and forgive her.

She knows we have also paid for cleaners & childcare.

She knows I've had home adaptations due to physical problems associated with autism.

I do have emotional as well as practical support now.

Thank you.

I appreciate the posters who have understood the dynamic/situation.

Unfortunately there are many of us with similar experiences.

Good for you x

I have an adult autistic daughter, I think whilst I acknowledge that she has specific issues connected to it, she doesn't consider herself disabled. She is on lower rate pip. I think it's very different providing personal care, physically demanding care to the lower level support my dd needs. You cannot generalise with autism because it varies so much and few require few time carers.

I'm confused how you managed to meet someone date and get married without being able to have a conversation. Is it more it's got worse as you've got older

I think you’re being a bit unfair to your mum given she may be ND herself. Some people - not all - with ASD do struggle to empathise. Conversely, some people over empathise and it leaves them emotionally burnt out.

I appreciate you have higher level of needs now but you managed a very high level of education and to get married, so it sounds like your childhood and teenage years were not as complex. Perhaps your mum is having a hard time accepting this? I am not excusing her, just explaining it.

The Government disagrees with you:

The introduction of the Autism Act 2009 was ground-breaking because it was the first disability-specific piece of legislation in England. www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026/the-national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026#joint-ministerial-foreword www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026/the-national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026#joint-ministerial-foreword]]]]

The statistics on employment for people with an ASD diagnosis are shocking. Only 30% will be in employment (compared with 50% of other disabled people and 80% of non-disabled people).

Not OP, but receive high level of care from family members.

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.

She is not worng - she did not have disbaled child at the time- you were not diagnosed.
She has a disabled adult child

"I'm confused how you managed to meet someone date and get married without being able to have a conversation. Is it more it's got worse as you've got older"

I've only been on 2 dates in my life. Men are more interested in sex than conversation ime.

I can talk to people 1:1 (info dump) once I'm familiar with them and allowed to talk about a topic of my choice I'm interested in. I have more stereotypical 'masculine' interests like sport stats and men have lower standards/expectations of conversations than women.

I've never been married. I wouldn't have anyone to invite to a wedding.