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I think she’s mired in the outdated view that disability isn’t there if you can’t see it. If you have qualified for HRC PIP component then your needs are clearly substantial and, just as clearly have gone unmet for years. I have a physical disability and probably from the same generation as yourself, when disabled people tended to be institutionalised. You’re not unreasonable to think that, yes, she was the mum of a disabled child.

Oh come on, you know full well she is thinking of physical disabilities.

how did you get through your school years with no diagnosis if it’s so severe now? Seems unusual

I think this is the point. She clearly doesn’t think disability exists unless it manifests in something you can see.

Not unusual at all for certain generations. It’s much more recognised now. And just because there is nothing to see, doesn’t mean there is no disability.

You think she has ASD. She doesn’t consider herself to be disabled.

You are asking her to see herself differently as well as you. It’s tricky.

I think you need her to acknowledge your disability because you want her to own that she didn't support you properly. I think she needs not to acknowledge your disability because she won't want to have to own that. Stalemate.

Well I'd assume someone who has a carer now must have had a TA in school so the parents would have been aware. I had a TA sitting with me for a year.

It could also be because its not a visible illness (ie someone in a wheelchair) she doesn't recognise it??? I'm sorry you are having a rough time.

One of my Dds has an autistic child. In no way whatsoever does she consider her child disabled! He is different, that is all.
It is highly likely that another adult child of my own is autistic judging by their behavioural traits but there has been no official diagnosis as yet, and there may never be.
For goodness sake, give your mother a break.

Have your needs worsened as an adult or did you need full time care in your teenage years?

Also she was referring to having to physically push someone in a wheelchair? I need a wheelchair but am saving up for an electronic one because I just think it's such a huge burden to have to physically push someone around and I really admire the people who do this.

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.

What?!! Wow. I am stunned at this. Your autism is significant enough for you to have a full time carer now but nobody picked up on your additional needs as a child?

That's appalling. And it sounds like your mother is trying to gaslight you. What on earth...? It's unbelievable.

Interestingly when my children were young autism and other neuro disabilities were rarely spoken about. One adult child has recently self diagnosed as ADHD and says it explains so much of how she felt/feels in being different from others. She did fine at school and university and her differences were never picked up.

I had no idea at all that she felt different. The OPs mother probably also didn't know. Remember too that neuro diverse girls and women are very good at masking their differences.

I have been sectioned many times, and whenever my mum visits me - she is "is hospital for people who can't handle life?"
Total denial.
I am looking into being assessed for ADHD/ASD, and the fact you need parietal input fills me with dread.. they will be "yes, she is just fucking lazy and unmotivated."

My DS has autism. While technically I am the mother of a disabled child (and also technically disabled myself), in the same way I am technically a carer, neither are ways I would ever really think of myself. DS is just my DS. He is his perfect self. I support his needs as an individual, as I did for my NT DD. His needs are different to hers but they would be even if he was NT too.

Sadly for those of us who are late diagnosed we usually require higher levels of care in adulthood than childhood as we've reached burnout point from the thousands, and I genuinely mean thousands of traumatic instances we've had to put up with especially with not getting our needs met.

Autism burnout is different to say, stress burnout and you experience skill regression and cognitive impairment. Some of these skills never return.

It's really sad because if our needs had been recognised as a child, we may be living as more independent adults now and would ultimately cost the taxpayer less as we wouldn't need the higher rate care components on our disability benefits.

Sorry op, but I think that Temu is right. Not all disabilities are of equal severity, and there are different experiences. Your mum cannot imagine having a seriously disabled child who would be fully dependent for life.

Based on your post I’d say she sees YOU and not your diagnosis. Which is how most people would prefer it.

Diagnosis didn't lead to any help when I was diagnosed. Only lead to my dm trying to correct me for everything I did wrong to try to make me normal. More than she did before the diagnosis. It led to more distress and burnout, I think, than if I hadn't been diagnosed.

I just think she meant a signify physical disability.

2 difficulties here:

Autism (and adhd etc) was not known as it is today. For many people even now, autistic = very extreme cases on the spectrum.

The difficulties as a parent are not even comparable depending on the severity.
I have a son with high funct autism. Yes, he has frequent meltdowns during which he often screams, throws things at me etc. I spend hours researching on autism/how to handle things/advocate for him. I struggle with balancing his needs vs his siblings etc
BUT I know he will lead a ‘normal’ life (work, live independently, create a family), he is in mainstream school, has friends, etc

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

…

I did have obvious additional needs as a child which were unmet both at home and in school.*

But from her experience, being a parent was nothing like the woman she saw and commented on. She didn’t cope with a disabled child (because your needs were unmet) and she hasn’t had to delivery lifelong care (because you have state support).

So actually, it’s not odd that she sees the two scenarios differently.

So everyone in OPs life failed her until adulthood then, if not a single teacher or relative or friend picked up on such a severe disability that means she cannot function as an adult without assistance

I’m trying to understand. Would you mind describing your symptoms.

I was thinking that maybe you had to mask so much that she was able to turn a blind eye.

Did she never see your symptoms?

But surely the category for disability is huge. I'm in a support group for parents of disabled children and the difference in their needs is stark.

What support did you need as a child?