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?

Is your husband your carer? I think it's a bit off to compare an off hand comment about coping with a disabled personwho needs feeding and caring for in the same way that a young child would who cannot communicate much verbally and an adult who has children who lives with their husband and can advocate for themselves. Yes autism is a disability but not all people with autism are disabled in the same way.

You're not disabled!

I don’t think your mum is being unreasonable.

She might just be saying, some have it harder than others.

My friend has a child with complex special needs, she at times has said … that mum with Downs Syndrome child is so lucky. And she means it.

This friend has a lived experience which is really a challenge- who am I to judge her for her thoughts on Downs vs other disability.

Why do you believe this, from what expertise do you have this information?

My ‘D’ M told me for years she refused to accept my label (ASD). A few years ago when I mentioned dla for one of my dc with ASD she exclaimed ‘if I’d known I could have got money for you I’d have been fine with it !’ Wtf

I wouldn’t worry too much about this actually. They will make their diagnosis snd if it seems she is oblivious, that will be obvious to them. This won’t be their first rodeo with people like your mum.

I think ASD is often referred to as a disability. It’s not a description that comes naturally to me as the people I know on the spectrum can be different in ways, but for several of them they actually have quite remarkable abilities. So it’s not a description that feels very useful to me knowing them.

I have a disability. I never considered autism to be a disability though. Perhaps your mum thinks the same? Sorry

Do you know what the spectrum actually is though? Because evidently you don’t know enough about the op to suggest she’s not disabled by her autism.

You are not being unreasonable OP. That sounds hard for you.

Do you have people to share your thoughts with in real life?

Nor does my sister, if anything she feels it more keenly.

I do know. And I understand the challenges.

I also know some people are overwhelmingly challenged rather than enabled by autism. However I’m just saying that it never seems to be a disability in quite the same black and white fashion that, say, loss of the use of one’s legs would constitute. That may be why some people tend not to classify it as a “ disability.” I don’t think it’s intended as a dismissal of attendant challenges.

Thanks for your post. I do wish I'd never been diagnosed, or could have chosen for myself in adulthood. My dsis is undiagnosed and had a different experience, with our dm often finding her difficult but just seemingly accepting that that was just her, who she was. With me, after diagnosis it was something to fix.

Sorry to hear that you are feeling like you can't work. I don't know what sort of job you do but I could never get past the interview process to get anything other than a minimum wage job, which may have made work easier for me, though frequently soul destroying.

Ok, can you explain what the autistic spectrum is then? And if a condition challenges you ability to lead a typical or expected life, surely that is the very definition of being disabled?

Amazing! You have a full time carer and your own mother doesn't think you're disabled?

So often are usernames apposite: lost the marble.

It was an observation based on a perspective which might, or might not, be relevant in a consideration of the OP’s mother’s perspective as well. People are entitled to proffer such perspectives without being subjected to some kind of online examination by a curiously aggressive poster.

You think I’ve lost my marbles because you can’t explain what the autistic spectrum actually is or understand how it’s a disability? Ok then.

I understand absolutely the challenges faced by the individuals I know with autism. They vary.

ASD diagnosis makes a person eligible for DSA, which is Disabled Student Allowance at Uni.

ASD IS a spectrum some more able than others. It’s a lifelong condition, as defined is a disability. Whether a person needs accommodations or Support varies.

Yes, they vary within the ASD spectrum and they can vary with an individual throughout their lives. But autism as a condition is a disability which is the part you seem to be missing.

I don't think it's unreasonable for an adult DD to wish her DM acknowledged her lived reality.

My disabilities are complex and mean I don't have a normal adult life. She could be more supportive but chooses not to.

I do harbour resentment about this, rightly or not.

I don't know, she's quite tunnel visioned. We aren't close.

She had no reaction to my diagnosis. She never mentions it.

She knows my DP had to give up work to be my full time carer.

She worked full time from when I was a baby so never provided me with that level of care.

I maybe should have put this in the op but she wasn't just referring to the physical aspects of the disability of the girl in the shop, she commented on the emotional toll of having someone who didn't behave in a typical way in public (the disabled girl was making loud noises).

Yes, on reflection I think she didn't like having anyone dependent on her, even without disability thrown in. She was keen for me to leave home early and didn't support me as a young adult the way most parents do.

Some of this is why I believe she's autistic, which is ironic.

She knows my DP had to give up work to be my full time carer.

She will - I expect - have no idea of what level of care that is, given that you coped OK (in her eyes) without it when she didn’t give it to you. The fact that it’s your boyfriend and not an external agency providing care will - in my experience within my family - also make it sounds less “needed”. Because it’s your boyfriend, he’s just “helping” rather than providing essential care. From her point of view too, you didn’t have a career (it sounds) for your early adult life but had a relationship, kids… all those things will looking to her like you were coping and not disabled. I don’t know why you need a carer now, but if as a PP said it followed burn out, your mother is just too old I expect to be moving in the kind of circles where that is discussed. I suspect she’s very clueless about what your needs are now, just as she was when you were a child. Not excusing that, just being factual.