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?

Could it though? Because what I keep seeing on these threads ( and if I’m not wrong even in this one above somewhere) is that little can really be done to help beyond acknowledging.

Yeah I think it would’ve made a huge difference to his life. It was just brushed under the carpet that he was problematic. He now has a drug and drink problem at a guess I’d say self medicating. My childhood was awful as he was violent towards me both physically and verbally so yes it would’ve made a huge difference to our whole family

One thing I can't get my head around (perhaps unsurprisingly, as I’m not autistic!) is that you seem to have a good understanding of what social norms are: I.e., you're aware that people "should" brush their teeth/shower regularly, or that conversation involves back and forth between two people. I'd be really interested to understand (if it's something that it's possible to explain) how one can have such a clear awareness of these norms and not be able to follow them. Perhaps less so the social stuff, because that can be a minefield even for NT people, but certainly the stuff like showering etc.

Not in any way trying to be goady, and I apologise if this comes across as insensitive, but I’m genuinely interested to understand what the stumbling blocks are with these sorts of things!

No that's not what I am doing. I am just trying to understand the situation because I am finding ops posts hard to follow and I expect her mum is being unreasonable because how can she not see how much op struggles with daily life?

I suppose though if you asked many parents what their experiences parenting a disabled child are... Sadly a lot would centre around challenge, fighting for school support, in some cases the diagnosis itself, having to leave your job, money worries, 24/7 care, fears around the future, road safety, changing nappies and navigating the health are system and the absolute exhaustion.

If your mum didn't do any of this then perhaps she doesn't connect you as being disabled. (Not excusing... Just trying to understand)

Not the op (and whilst I’m autistic, i don’t have difficulty with personal care / hygiene). But the difficulty is often a combination of sensory (aversion to water, smells of cleansing products, taste and feel of toothpaste etc being absolutely unbearable to someone), processing differences (transitions between tasks being very difficult to navigate, sense of time being different and not realising how long it’s been since the last wash), difficulties with interoception (awareness of bodily sensations, not knowing when we’re hungry, thirsty, hot, tired, smelly) and difficulty with sequencing tasks (not being able to navigate the steps involved and the order in which we need to do them. These tasks are cognitively complex).

I think not understanding and asking questions is fine. What isn’t fine is the attitude of ‘I don’t understand it therefore i don’t believe it’ that autistic people often encounter when we describe things we find challenging.

Autistic people often marry autistic people. So the conversational norms and ways of communicating are different. We also often have autistic children. Whole families of neurodivergent people are common.

I learned these things by reading dozens of textbooks on autism, social psychology, etiquette, social anthropology, body language, parenting, etc.

DP has taught me more.

And I've learned a lot from Mumsnet after reading threads over the years.

I'm gaining new insights all the time including on this thread.

It's really disappointing that so many posters are reacting to the OP with suspicion rather than acknowledging that she's a vulnerable person who feels rejected by her DM. Picking apart her posts, asking for a list of her symptoms and interrogating her about her specific care needs, even questioning how she can possibly have managed to get a boyfriend is all completely unnecessary. Even more irritating are those expressing faux shock and confusion about her having high support needs now but not being diagnosed as a child...seriously, just say you don't believe her, your "I'm so confused, OP.." "gosh that's really surprising, how unusual" shtick isn't fooling anyone.

I think many of the responses on this thread are proof that OP's DM's dismissive attitude towards Autism isn't just "a generational thing". Sadly it's much more widespread than that.

OP, I'm sorry your Mum doesn't get it. I can understand why comments like that would feel really invalidating. Of course its not unreasonable to want to feel seen and understood by your own family. As a previous poster said, you may get more helpful responses on an ND specific forum.

Even more irritating are those expressing faux shock and confusion about her having high support needs now but not being diagnosed as a child...seriously, just say you don't believe her, your "I'm so confused, OP.." "gosh that's really surprising, how unusual" shtick isn't fooling anyone.

Not faux in my case. I'm autistic and have autistic friends and family and it does genuinely surprise me.

You WANT to be labelled as 'disabled'? Well, yes, obviously you do for the purposes of claiming support. But your mother sees you as normal.

I suspect that if you heard her referring to you as 'disabled' you'd swing round to objecting to THAT term!

I bet it's this.

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

That was my reaction, too.

Exactly this I'm technically disabled physically and mentally but I never use the term unless it's to do with benefits. I don't see myself as disabled and I don't expect others to either. Yes my life might be harder in some ways but everyone's life is hard. My issues are my problem and I don't want to be that person posting on Facebook about my diagnosises or hospital appointments just for others to be like you ok hun pm me. People know I'm different they can tell that within minutes of meeting me but it doesn't need to be advertised as everyone is different in their own way. Certain people seem to think people who are NT or not disabled have perfect lives and don't face these struggles and it's just not true. Whenever these posts arise and people start listing the struggles they face, their actually really common things that most people struggle with but others aren't aware of as you don't see their day to day lives and what happens behind closed doors.

No, you are incorrect in your assumption that you need a diagnosis in order to claim PIP or other support.

I also have some low level support from 2 different autism charities, neither of which required a diagnosis. My obstetric consultant accepted my disability pre-diagnosis. My rights under the equality act do not require a diagnosis.

My point that I think some posters have missed, possibly from skipping later posts, is that my DM (and everyone who spent any time with me) recognised there was something 'wrong' with me. They just didn't have a word for it and was used as an excuse to shame me and mock me throughout my life.

I think some of the earlier posters got it right- as so many kids of the post war generation were institutionalised they only think of conditions such as Down Syndrome, Cystic Fibroses, Muscular Dystrophy, Cerebral Palsy, Spina Bifida as disabilities.

I think younger generations have a more nuanced understanding of disability as encompassing invisible disabilities as well as the above.

I am aware that I'm an atypical case within the adult diagnosed community. I meet/know other adult diagnosed women & most live alone & hold down jobs. For the short time I did live alone I didn't function in a way that'd be recognised as 'normal'. But when you don't have friends or family there's no one to notice and tell you or anyone else that something's very wrong.

My DM did try to have me sectioned once so she certainly didn't think of me as 'normal'.

This is us too. DS reckons he has ADHD and is trying to get tested. If he does, it wasn't obvious when he was a child (other than perhaps being a bit dreamy/scatty).
I've never thought of myself as a parent of a child with disabilities, but maybe I need to start now so thank you for the prompt OP.

My son is 16 and autistic - he was diagnosed when he was 8 (aspergers syndrome) as it was then. But I would never think of him or use the term disabled. He was head boy at school and holds a job down but if his routine gets messed up he will shout scream and swear in public - school and work are a breeze for him as they are very rigid and he loves people. I thought disabled was an old fashioned term used to describe autism. Especially as now if you have ASD it is not classed as a disability so you don't qualify for a free bus pass. 5 years ago it was classed as a disability as you were able to get a free bus pass. BUT I can see the confusion as ASD can also mean non verbal, no bladder control and not able to function without a carer and these people would be classed disabled which is very confusing

Agree with this. I just want to be seen as normal. That's all I've ever wanted. But people see the wheelchair first. It absolutely fucking sucks.

Not sure your children will thank you for labelling them disabled. It so much depends where on the spectrum they are.

My dd was diagnosed with ASD (Asperger's) at 14.
I don't consider myself the mother of a disabled child and she doesn't think of herself as disabled either.

Your not unreasonable to think that, Autism is a disability. However, as you was diagnosed as an adult, your mum didn't realise you had additional needs a child and doesn't provide you with care now her reality is that she hasn't had the experience of being a parent to a disabled child.

Also depends whether they view disabled as a negative label.

Yeah I've always wondered this too. I often come across autistic young people on reddit and places who say they've never had a relationship, hell a lot haven't ever even had a friendship, they have no idea how to interact socially. Then you have all the people on the spectrum on MN married with kids, when autism manifests itself in struggling with social relationships. I do wonder how they are so different to the young people on other forums really struggling with this. Who think they'll never be able to be in a relationship and blame it completely on their autism (and resent having it a lot from what I can tell) I don't understand how you can just "fall" into a marriage and have a child. Relationships are hard even for NT people.

I think a lot of people still think of disability as physical impairment.