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?

No, you aren't. They don't go round dishing out PIP for no good reason, and the fact you need a full time carer speaks to how difficult it is for you to deal with your autism.

However, is your DM of the age where having a disabled DC is somehow shaming? That could go some way to explaining her attitude, however wrong headed we know her to be,

I was born before the community care act so I suppose then most disabled DCs were put in institutions?

To her autism = non verbal as that was her experience in 1950s-1990s.

what does it matter? you are an adult and you are in charge of your own life, why do you need her to 'accept' your disabilities?

you've aleady said the relationship was difficult.. will her accepting make it any better?

you were not diagnosed sadly as a child, nowadays these things are picked up a lot quicker than they used to be.

Oof that's got to hurt. Is she refusing to acknowledge anything autism related or has she not twigged that autism is a disability? How did she react when you were diagnosed? Does she realise you need a carer?

She made the comment after seeing someone in a wheelchair so perhaps was referring to physical disability?

She’s obviously not accepted your disability but then some people won’t recognise hidden disabilities and think you can only be disabled if you’re in a wheelchair. Of which only about 8% of disabled people are full time wheelchair users.

I agree with this, she clearly has a blinkered view of disability being a purely physical thing. She does not see you in the same way, and probably isn't capable of it.

My mum would never accept my sibling’s autism diagnosis. She used to say they were ‘a little bit backwards’.

it sounded like she meant physically disabled, so having to lift someone, help feed them, wash them, clothe them etc or if they couldn’t speak but I can see if you don’t get on so well how it would hurt.

If your needs were left unmet and she didn't seek additional support or a diagnosis for you, then her experience is probably very different to that of most parent carers. If I'm being charitable, she probably carries a lot of mum guilt for not see and supporting your needs as a child, but needs to keep the cognitive dissonance going as a defence mechanism.

I suspect your DM response is an age related cultural response. Disability was often ( incorrectly) only thought to be a physical thing i.e. wheelchair bound.

People suffering from any of the ND conditions weren’t considered disabled in the same way, but those with more pronounced symptoms were often placed into care, and those staying with their families were “that’s just how xxx is” No one really wanted to admit to having a neurodiverse child or one suffering from mental health issues / learning difficulties as if they were able to stay at home they weren’t considered disabled.

Please don’t let this upset you. The majority of society has moved forward in its thinking and accepts, as does the law, that disability includes ND and MH conditions as well as physical disability.

I always think I wouldn't have been able to parent a life long disabled dependent child but I would just word that as disabled but mean a child who would not be able to live dependently and I would worry about who who care for them when I couldn't. Maybe your mother thinks along those lines? And it is nothing to do with accepting you and your needs

There’s a difference between someone who has autism and someone confined to a wheelchair.

This is very similar to my own experience. Not with my mum, my mum has accepted my diagnosis and even queried her own neurotype, but with family members.

For my nan she can't possibly conceive that I'm disabled as I'm "like everybody else in the family" and we've all made our own accomodations although the lack of acknowledgement that it is a disability is probably also one of guilt because then those who are refusing to acknowledge would have to admit to neglecting my needs, and probably the needs of their children too. Nobody wants to admit to neglect or being the source of trauma.

It's really hard because I'd be willing to forgive if I could see personal growth and acceptance but I can't forgive or move on if I'm the only person expected to bear responsibility for what has been a traumatic upbringing.

Funnily enough my male child who has also been diagnosed has been fully accepted, understood and accomodations made for him and that stings, because there's still ingrained internal misogyny within the understanding of autism for friends and family. Its generational and it's out of my control, but I am glad my child isn't having to suffer in the small but frequent ways that I did.

My half brother is autistic, diagnosed quite young, but I doubt any of his parents would have considered themselves as parents of a disabled child, despite acknowledging that their son is autistic (its never been a taboo im the family)

He was a challenging kid, but is now a very well-rounded adult, he has a job, a flat, a car, a fiancee...
Even as a kid, he didn't need constant supervision or care, just some adjustments in his studies. His parents never had to give up work.

My niece is autistic (non verbal, only basic understanding- she's a teenager). My sibling knew there was something wrong from about nine months. She told our mother (born in the 1920s, educated to masters level) that she had ASD and her response was 'oh not that serious then'. Because in her experience ASD meant a bit slow, and a bit uncommunicative, not the profound special needs the child actually has. She would not have called her disabled either.

You're asking your Mum to shift her perspective. Yes, you clearly had additional needs that weren't met but she couldn't meet them because she didn't know. Neurodiversity in women truly has been an invisible disability - invisible even to the disabled individual who has no way to understand why they feel different or 'wrong' and invisible to the mothers who cope the best they can with the child they love.

As far as your mum is concerned, you weren't disabled because there was no way for that to be acknowledged. You've shifted your perspective because you understand your challenges, perhaps your mum can't - you're just you, difficulties and all. Mum's usually do their best, a diagnosis doesn't just rewrite your past, it rewrites your mum's too and she doesn't want that.

Lots of autistic parents can't see what is obvious to others because it's 'normal' to them. I'm autistic and a mum to autistic children. My DP are no longer with us, but I recognise it in at least one of my parents. Sometimes I feel let down, but they didn't know so what could they do? Yes I would be hurt if they didn't acknowledge my diagnosis but I also acknowledge that I have no right to try and rewrite their past against their will. Let her be OP, she may not want to change, make peace with the fact she has a right to her own perspective. We often talk about our own truth and yet deny that courtesy to older people.

My child is autistic and he requires no support physically, never used a wheelchair, would never be eligible for PIP. So no I don't class him as disabled, and he doesn't class himself as disabled either.

It is only fairly recently that the definition of disabled was extended to ASD and your mother may not know/understand that. To her, as with other women of her era, such as me, "disabled" meant physically, not mentally, emotionally or any other way. She spoke from her decades-long established knowledge base, and I'm sure did not mean to insult you. I think a little forgiveness and gentle education is in order.

There was a long period when autism was seriously considered to be the result of a failure in the mother-child bond. In other words, purely and simply the mother's fault. That perception lived on socially long after the mother-child bond failure theory was debunked. It's not at all surprising that some mothers of adults will still find it difficult to accept an autism diagnosis because even if intellectually they accept it's nothing to do with them, internally they feel a great deal of shame at being somehow at fault.

How were you able to navigate most of your adult life without things being so clearly a problem that you received a diagnosis and yet post diagnosis are so disabled as to require a full time carer? Genuinely surprised at this, not trying to be goady.

I have an autistic child and two other autistic family members and the only one who requires care has been very obviously in need of assistance to function from quite young.

Yabu.
As a parent shes saying how she would have struggled perhaps woth a child with a physical disability. Shes allowed to think that would be harder.

I do think this is why levels of asd and then also aspergers are needed. It does sound like you need assistance but under new criteria there are asd people who cope ok living independently etc.

Obviously having a child who isnt toilet trained or cant speak etc is not the same at all. But if your child is incredibly difficult and wont follow instructions safely they are also not living a normal childhood.
My kids were both incredibly challenging under 5s and loke the toddlerhood extended much longer its very exhausting.

Many adults and young people who are verbal and able to write like the OP can still qualify for the highest rate of care and mobility because of the needs they have. To qualify for the highest rate you need 12 points. Needing prompting or supervision in most areas of life will be enough.

I'm surprised, too. I was diagnosed as a teen in the nineties, then basically left to it. I raised a child as a lone parent and work the same as anyone else. How does someone with such high needs get through to adulthood undiagnosed?