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?

I didn't accuse anyone if you are referring to me. I was saying unless you think autism can be cured then I am still autistic, but I am not disabled.

Many women feel they’ve learned to mask to the point where they question whether they’re actually autistic. Men usually go completely in the opposite direction as they get older. It’s down to the social expectations of women vs men.

I find task transition extremely difficult. Like the frog in the boiling water. I'd boil rather than jump.
I get so focussed and fixated on a task, being interrupted by something like toileting or eating or toothbrushing etc is more painful/uncomfortable/difficult than the pain of needing the loo or dirty skin/hair/teeth itchiness etc. eg right now my bladder's sore cos I need the loo but I'm writing this post instead!

Thank you for answering. Now, please use the loo. You don't want a UTI.

I have two autistic male colleagues in their 40s/50s and it's like watching myself as a teen at times.

"Was this the same when you were a teenager at home ( in bed all day etc.) or did something change? Autism was much less recognised, including by mental health professionals."

I almost never left the house between coming in from school on a Friday until til leaving for school on a Monday morning.

DM wouldn't let me stay in bed so I spent the weekend in front of the tv in the living room. I never had a friend call round or had a friend's house to go to.

My disability wasn't invisible to DM growing up. She was very much aware I was abnormal. She told me so often enough! Often berating me for being 'fussy' with food, (I'd have the exact same food every single lunchtime for years) watching the same films 100+ times, obsessing about topics, staying up too late at night (I have early childhood memories of sitting up playing on my own for hours in the dark after I'd been 'put to bed').

I was clearly autistic to any modern Mum.

She's always telling everyone what a difficult child I was even though I never did any of the 'normal' bad teen things like staying out late, boyfriends, parties, drugs etc.

I just thought post diagnosis she'd see me not as a 'naughty' child but as a child who struggled with a disability without any support.

Before I met DP I had such frequent UTIs the GP gave me prophylactic Antibiotics. I now take cranberry tablets every day. I do have slight bladder issues which is one of a few physical conditions that has manifested because of my autism. As you get older it does seem to be at the root of a few physical problems as well as the direct issues. That's the case for almost all the middle age autistic women I've met.

I wonder @Carebearsonmybed if you feel you can moderate your behaviours, given how in touch you are and how eloquently you express them?

You seem to have surrendered yourself to living with these severe restrictions. I speak as a ND person here, myself. Don’t forget - autism is a massive, noisy passenger, but you drive the bus.

I’m aware of the issues that ADHD brings to my life and am learning to accept and forgive myself when it gets to the end of the day and I’ve forgotten to eat, but I don’t let it ‘own’ me and I keep thinking of strategies I could do to help myself.

I’m also kind, educated, incredible at organising things, can have five conversations at once and have crap eyesight.

I get PIP and my husband gets carers allowance. He makes all my meals, so I’m not writing with no experience.

I’ve made a poster, with images, and stuck it on the inside of a kitchen cupboard - drink water, take meds, do your exercises. I have to take eye drops everyday and I kept forgetting if I’d taken them or not so now I write the days of the week on 7 vials, so I can check. I’d hate my husband to have to manage my meds.

It’s far from perfect and I frequently get in to bed at night and think oh no I didn’t….today!

Why do you accept UTIs because you don’t go to the toilet? Set an alarm for every 4 hours in the day, and go. Take back YOU.

I don’t think you’re ever going to get what you want from your mum, however disabled you are.

Lovely post @Apolloneuro
I wondered myself, but you asked far more eloquently than I would have done.

Thank you x. Four years of expensive psychotherapy 😂

Thing is, I have a hunch that the lovely OP wants her mum’s acknowledgment of her difficulties, which she’s not getting…so ‘Look see how disabled I am mum! I can’t even go to the toilet.” All this is subconscious - not saying on purpose.

I have masked and had numerous jobs in the past. But I've burned out.

I had lots of adaptations in my last job which is why I stuck it longer than any other. But no employer has the power to change the behaviour of other staff. I know in theory you will say bullying/victimisation/harassment in the workplace are unlawful but these behaviours are endemic and normalised.

I can do the intellectual part of a job. What I can't do is stop other people bullying me. It happens everywhere I go. People find me intolerable, even my own family. So they treat me like dirt until I quit/leave. It got as bad as a suicide attempt after workplace bullying so I'm just not going to ever risk that again.

Re the UTIs I didn't realise the cause at the time as there was no one to tell me. It was years and years ago.

I realised when I was a young child that I'd never get emotional support from DM. So I don't expect it now. I just thought telling her about the diagnosis (which I put off telling her first months) would cause even a flicker of enlightenment, I see from her comment I posted about I misjudged her. I really wish I had a normal Mum.

I don't know much about psychology but I think it comes across to me as something like learned helplessness, or a low sense of self-efficacy.

I’m not talking about masking, although I get your point.@Carebearsonmybed

I’m talking about taking back your life by recognising your strengths and weaknesses and mitigating things you find difficult, at least a little bit.

I do mask in social situations, but I mean like how I label my eye drops so I can control taking them, rather than my husband handing me one every day. That sort of thing.

But no employer has the power to change the behaviour of other staff. I know in theory you will say bullying/victimisation/harassment in the workplace are unlawful but these behaviours are endemic and normalised.

Was this all your colleagues or just some nasty ones? I'm being bullied by an ex, who I broke up with and moved on from four years ago. Bullying that I can't prove, my manager is aware and believes me but also can't act. It gets to me but I also know it is about him not me so I try to ignore it or laugh about it. I do have colleagues I have positive relationships with as well though.

I realised when I was a young child that I'd never get emotional support from DM. So I don't expect it now. I just thought telling her about the diagnosis (which I put off telling her first months) would cause even a flicker of enlightenment, I see from her comment I posted about I misjudged her. I really wish I had a normal Mum.

But surely you can understand that if your mum is likely autistic/ND like you then she just CAN'T do the things you want. Like you say she wanted YOU to be "normal" and do normal things, but you say you can't because of your autism. Which is fine. But just because she's not diagnosed doesn't mean she can do some things.
She wants you to be a certain way and you can't. You want her to be a certain way and she can't be.
I imagine if your children said they wished they had a normal mum that would be quite hurtful as you know the way you are isn't your fault.
You want your mum to be acknowledging all your difficulties, but fail to acknowledge hers. Neither of you are necessarily at fault. Just two very different ND people with conflicting difficulties.

You children might feel that they wish they had a ‘normal’ mum. That’s the thing about ancestral trauma. It perpetuates.

edited - I was taking your words. I’m not saying you are not ‘normal’. I don’t know you.

@Carebearsonmybed you haven’t answered @Apolloneuro question at all. I suspect because you know you COULD, but don’t want to.

What physical problems do middle aged autistic women have that NT women don't? I hadn't heard of that. Are you talking about 50+?

One last post because it’s not really any of my business.

I was told by my therapist that there’s always a gain from a situation. For example, I’m ill a lot. My husband looks after me very well when I’m ill. I was neglected as a child…you can see where I’m going.

There was a part of me that benefited from being ill as it achieved me something I had been missing. I’ve needed to try to learn that I’m a grown up now, and can care for myself, although I’m much less frequently ill.

I wonder if there is a part of you that is benefitting from this almost parent/infant relationship you seem to have with your husband. Him cleaning up your period blood, really? What’s that about?

You could look at the work by Gabor Mate, or Louise Hay or read “The Body Holds The Score.

I won’t post again and I wish you well. Xx

@Apolloneuro your posts have been very insightful and well written. I hope the op considers what you’ve said.

Yes, I don’t think Autism is a comparison. Physical disabilities bring different challenges.

@LostTheMarble I am not misinformed at all!

1. I have a child with Autism

1. I was a PIP Decision Maker for a number of years.

OP's last update makes it even clearer that she's in receipt of a rate of PIP she is not entitled to. Situations like this and attitudes like yours are what made my job several times more challenging than it need be.

@Strawbag6364 It is not incorrect at all. See my last post.
If what you have said is correct, then your child is receiving a rate of PIP they are not entitled to.

You absolutely are incorrect, I am a welfare rights lawyer dealing with PIP appeals. PIP decisionmakers often make decisions that aren’t in accordance with the eligibility criteria or the law. You’ll know, if you have done that job, that enhanced care isn’t going to be awarded unless the medical evidence supports that level of award.

I am autistic and receive enhanced PIP, for both components. As does one of my dc. I have many autistic clients receiving enhanced rate care. It absolutely is not, as you claim,
’… only awarded for people who are completely bed or wheelchair bound. Slightly different parameters for DLA's highest rate of care but those are the Parameters for PIP’s highest rate of care’.

That simply isn’t true, nor should you be accusing people here of receiving awards they aren’t entitled to.

You will know that 12+ points secures an enhanced award. It is absolutely possible to score 12+ points when the need is for prompting, supervision and social support across many descriptors.

She absolutely is entitled to it. We were urged to apply for it and we have letters from NHS professionals backing up her claim. She was assessed and I was absolutely scrupulous with the form making sure it was completely honest and described her need exactly as it is. She got enhanced PIP on the basis of her form, the points she has and her supporting evidence all of which were 100% correct.