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?

Maybe it is shame she did not realise or maybe it is because she never saw you as 'different' or maybe it is because shes like my mother and a complete arsehole and needs to show a perfect life to everyone.

For context I am late forties, own career, home, raise a child alone. I do everything and have excelled at most things. I got my diagnosis last year. She rang my childs school to tell them I have special needs and can 'no longer' care for my teenaged child. In her case it is because somehow the attention was not on her and this is what she did. I have not spoken to her since. Takes all sorts of minds.

I am on the highest care component of PIP and have a full time carer.

I must admit this is a bit confusing, as you sound quite profoundly disabled and your mum hasn't noticed at all?

It in no way surprised me that your autistic mother totally neglected your problems as a child, and is still completely unable to understand you.
I have an autistic mother and she is the same.
I have nothing to do with her now. Life got a lot easier when I realised she can never be an actual mother.

Literally a common symptom of autism - little or no ability to see things from another’s perspective.

I think yabu I kind of see where your mum is coming from and I'm saying that as someone on high rate pip so technically disabled but not a word i would use.There are different levels of disability. I think what your mum is talking about is she wouldn't of coped raising a child who couldn't walk, talk, feed themselves and will be in nappies for life. That is significantly different to raising a child who has challenges but for the most part is capable and self sufficient which you've proven to be by not getting the diagnosis until later in life and living independently.

Look, to your mother’s generation ‘disability’ likely means a wheelchair, missing limb or Down’s. Trying to impose modern standards on a flippant remark and then judging her and feeling sad about it is such a waste of energy. If you’re independent and broadly okay in life, I can see why she said what she did.

Sounds like you might be autistic too.

Im 62 and when I was a child it was very common for people to put their disabled children into institutions as it wss considered shaming. We dont tend to do that now.

My sister has autism and a carer. But she doesn't see herself as disabled at all.

Autism is not always disabling though… which is probably the way your mother views it . There are many autistic people doing amazing things in high flying careers who likely don’t view their own autism as a disability. It appears that you don’t have a severe intellectual disability, which is probably what your mum means in your context. I say this as someone who cares for an autistic person, however he has significant learning disabilities and does not understand the dangers in the world around him he gets full rate pip like yourself, but if you were to ask him if he has a disability he would say no because there are so many things that he is better at than the average person. Eg memory etc

Charming. That's what you get from my post?!

That was my first thought.

Lots of people tend to think of “ disabled” as a physical thing only. I don’t think it’s intended to offend, just a nomenclature thing. And autism is different from a physical and very visible disability that requires physical assistance with mobility issues.

My parent is the same. I am autistic and have a life long physical disability too and they are always saying to me "there's nothing wrong with you" which I always used to believe (despite regular medical intervention, invasive treatments, trouble doing things etc!!) and thought I was just being dramatic, thats what I was told for so many years. I think it's more they don't want there to be anything wrong with me as it would be inconvenient for them to admit or deal with in any way, they want an easy, well, competent child with no problems as I think they see me as a reflection of their potential failings or weakness. I have very strong suspicions they are also autistic.

Not all of us. I do not lack empthy myself, not does my child who is on the spectrum.

I don’t know OP, I wonder if she is thinking of disability in certain terms.

I have very severe ADHD and my mum would never refer to me as being a disabled child because I think the term simply doesn’t fit the experience, if that makes sense. But it is technically a disability and it’s very life limiting in many ways.

This is what I was attempting to say, only written much more eloquently!

The same as one of my grandchildren. I do worry for his future but he has an understanding family who will give him the support as and when he needs it.

Very true. Dd's husband is on the autistic spectrum. He doesn't appear to have empathy to me and yet his child (also on the spectrum) does appear empathetic.
Note how few posters mention that autism IS a spectrum. I was told by a psychologist it is a very wide one and each autistic person is different.

I'm very sorry 😞

There's little to no help for autism.

The fact is even without a diagnosis you would still be autistic.

You still experience trauma harder than NT peers.

Your mum didn't make accomodations or advocate for you, she tried to make you fit neurotypical normative standards. That is a massive cause of trauma for most autistic people, at school, at work, in relationships.

It's unfortunately the case for most low support needs individuals and it leads to us having higher support needs.

For me, it was work that lead to autism burnout. I can't work like a neurotypical person.

Now I feel like I can't work at all.

Your mum should have treat you better, diagnosis or not. I'm sorry she didn't embrace you for who you are and what your needs are.

My DM is just the same. She much prefers to view me as difficult and lazy rather than autistic. I have the final stage of autism diagnosis later this year. The autism service want to interview DM about how I was as a child. I know she will tell them anything other than the truth, as she doesn't believe in autism unless it's extreme and non-verbal, so it should be interesting if nothing else. I feel you, OP 💐

It really isn’t. In fact, it’s pretty typical for someone who is wrongly thought of having ‘high functioning’ ASD to have a harder time with life post school. Whilst the social aspect of the school years are certainly harder for ND children, they usually (not always) thrive better with the firm routine it brings. Once you’re in the flux of adult life with higher expectations of using executive functions, that’s where those who seem ‘fine’ in their earlier years tend to breakdown. A lot of children not diagnosed or diagnosed with Asperger’s/Level 1 ASD are let down because they seem to be able to ‘get on with it’. Often these are the adults you see with depression/anxiety or even substance abuse/homelessness on a more extreme end who were let down because people assumed they were ‘coping’. Autism isn’t an intellectual disability, the high reliance on the ability to function socially is where the disability of autism comes to the forefront.

@Jimmyneutronsforehead I've just reached exactly the same point. I've gone from a high-flying professional role to PIP and UC, CMHT, CPN and EMDR. Can't quite believe it. And largely because I was never "allowed" to be neuro diverse (I'm also ADHD and dyspraxic).

Exactly this @berksandbeyond

Because it’s her mother. The first, strongest and sometimes most painful relationship. It hurts not to be seen and understood by your own mother. That pain never goes away. That’s why it matters.

I agree. Hence my point earlier that young women and girls 'successfully' mask their ND and as my own DD told me recently it was only once out in the big wide world away from school and uni that she began to find aspects of life almost intolerable. Having said that she doesn't see herself as disabled, just different. She is high functioning.